Katy loved seeing her heroines

This pic is katy's face when I showed her the pic that Rebecca Adlington had Tweeted of herself and Ellie Simmonds. I think I might stick.with Twitter for a while.

Oh Katy wants to send a congratulations card to the ladies. How would I get their addresses??!

Arggh children and doctors. And teachers.

I don't have the energy to write tonight. Had so many marvellous waffles to share. But today is my long day. Awake just before 7am to receive my first client (I am a childminder!) just after 7. Last lot left at 5 today! But then there is dinner, swimming lessons and usual faff. Mary is still awake now and demanding bread. So gone 9pm I still have had no time to myself.

I did have about 20 mins to chat to one of my swim mum friends. Lovely lady. Has 4 kids!! But enjoys it all. Oh except the squabbling. I can relate. Still Katy is being a poppet so can't complain too much.

GSD. Arggh. I can't tell and no one will tell me either if what I am feeding Mary is right. She takes ages to eat her breakfast. But I have been told we cannot starve her. I am of the opinion that if you chose not to eat the food put in front of you then you not hungry so can wait til next meal. This works for Katy. There are.some days she is just less hungry than others. Today not being one of those. Must be all the Olympic trAining. Mary on the other hand can be starved due to her GSD glycogen storage disease (please look it up if you want to know more. This is my moan blog not a medical.dictionary!). Although she has shown no lowering of blood glucose overnight nor raising of ketones. This is supposed to be a good thing. But do I continue to argue with her over her not eating breakfast. I err on the side of caution and make her finish. One hour this morning it took. Lucky her taxi was late. Then tonight, busy day at school, a school where they still can't grasp her needs but she has to go because they have the "deaf" " experts". Followed by swimming. So again I err on the side of caution and give her a slice of bread and butter.

This brings me to doctors and teachers. I had a lovely chat with the community pediatrician this morning. Apparently already had mary's file on her deaf when I called last week asking to see her. Who knows? One loves to think yes. Anyway she seemed to take my concerns seriously and we shall receive an appointment in due course. So qe shall see what her team can deduce about Mary. She is definitely odd. The medical medics can't seem to fathom her but as she is odd the teachers want to know.how best to deal with her. Everyone wants a diagnosis. A list of phenotypes, how the genetic disorder presents. Why is the child like it is? As Richard Dawkins brought to my attention, see Twitter is paying off, Genetics is not straightforward and there are all sets of interactions. But Mary is.just Mary and hopefully the community team with their OT, PT, SALT, psychologists etc wi give us a plan of how to deal with Mary. That will hopefully make the teachers happy. Oh made me mad, I don't usually get very mad. I spoke to her special teacher today. About equipment etc. She did say it was very important I hear Mary read everyday and write it in her yellow book so she can get a sticker reward at school. Apparently Mary's face was very sad when she didn't get a sticker today as I had not written in the book. Come on woman. I use all the bribing and cajoling skills to get her to eat by herself, to get her to change her clothes after school, to help me a little by tidings up after herself. Do you honestly.think there.is anything left to persuade her to do reading?? That said we did manage to read a bit tonight and more amazingly this is a big wow for my complicated six year.old.

I was chatting to mary's swim teacher after the lesson. Mary had wandered off to near thwarting changing rooms. I did see her at the edge of the baby pool. Not worried. Anyway when I eventually got up to where I last saw her no sign of Mary. It is busy lots of people, I can't shout for her- no ears on. I am not panicking yet. But I am getting concerned. I go to the locker to find her bag is missing. So I think she must have gone to get changed. Next thing I see is a naked Mary streak out of the ladies loo into a changing.cubicle. Door slams shut and locks. I loiter outside and a few minutes later Mary emerges fully dressed with her bag packed. Big grin on her face. Now why can't she take herself to the loo after school? Why can't she scoop her own cereal? The enigma which is my Mary!!

Katy had a good swim too and basically was a pleasure today. Just gotta sort out the professionals.

Hopefully I shall get to my musings on that soon.

Paralympics and all the thoughts that has elicited.

How long is it since I have posted? A fair while. What do I say now?

I suppose I can start with why I have not been here for so long. Basically it is because Mary has not been making as much progress as expected and predicted. The medics are still confounded by her and the educators are struggling with her. I am struggling with her. She on the other hand is not struggling with us. She sees it as the world's problem not hers. And long may that attitude continue. Well except while I am trying to instill some knowledge, values, everyday abilities and such like into her!

I started the Blog initially as a way of recording the progress Mary has made as a way of seeing that the implant operation and the therapies were working. Just reading back on what I did write reveals that we are a little further ahead but not greatly. Mary's speech is coming along, slowly. She still does things in her own time. She seems slow to grasp some things and yet incredibly quick to grasp others. To say it is frustrating is an understatement.

Another reason to start the Blog was a way of me coping with my life at the time. Two years on I find myself a single Mum with almost full time care of both my girls. I hold down two jobs and run the household. Their Dad still sees them and is quite good at being there for them. But it has been an emotional rollercoaster. Oh what  a cliche!! As things improved in my life I did not need to record every small improvement in Mary. Also I was too busy so things got left. Now I shall explain what brought me back to the computer.

This summer we have been watching the Olympics and Paralympics. Who hasn't? this has gotten me thinking on so many levels. I am coming to terms with Mary as she is. And Katy, can't forget Katy, she is turning into such a lovely young lady I am so proud of her and do try and remember to praise her and tell her. She wants to follow in the footsteps of Rebecca Adlington. We have signed her up to the local swim club and we shall see where that goes. Does one need to buy a hat to attend the Olympic Medal Ceremony of one's child? I shall Tweet and ask the Olympians and Paralympians I follow. I am on Twitter!! Joined this morning.

I have a need to connect to people. And boy have we seen some great people over the Summer. I have made some great friends via Facebook but still I want to meet and befriend more people. I think this is my thing in life. Being stuck home alone most days I do struggle socially. But I have some fantastic real life friends and my end of summer resolution is to bug them more. Thank goodness for Facebook. It connects you with people any time of day or night. People who have similar experiences, similar views and similar ways of looking at the world and making me laugh. People who have struggles of their own and also try not to let it get them down.

I am not one to force myself upon people. I prefer to let them come to me. But how will people know I am here? Because I can write about it. I joined Twitter after refusing for so long. I have yet to decide whether it is for me. You can't write much. And as you can see I like writing a lot. But it is another way to connect to other people and hopefully continue to share in the inspiration brought to me this summer. I am not one for celebrity and giggling over who I may or may not have seen walking down the street. I see most of them as people who have been fortunate enought to either be in the right place at the right time or to know people who know people. Yes a lot of them work hard at what they do but then so do most of the non-celebrity persons in the world. Hard work is not necessarily the thing that made them famous. Hence my reluctance to join Twitter and the hype associated.

The Olympic and Paralympic theme has been inspire a generation. Inspire them to what? Sports? I realise that not all of us can become elite athletes and indeed sport is not for all of us. I do try and keep fit, I walk to school everyday. I swim with the girls regularly and on my own when I can find the time. I even joined the gym two years ago although I fear the novelty is waning somewhat. But I have been inspired. I want to connect with more people and I want to write. This Blog is the start of that, joining Twitter is the start of that. Something I can do in the evenings on my own when I am not being bugged.

As to the tone of the Blog. That is changing. I have so many thoughts and feelings associated with raising Mary. She is wonderful adn magic but extremely hard work. On Facebook I try to be up beat about stuff but that is not always the way I am feeling. I am going to use this Blog to write about my feelings and I am going to be mostly quite honest. It would be great to have some support for that side of this journey. I shall write some more in the week. I have so many ideas. Until next time...

Wow what was that....

These past coupls of weeks really Mary's speech has really come on. I am very impressed not so much with the sounds she is making but the fact she is now making the effort to produce sounds. She will make a good stab at most words I ask her to say. For example when she wants butter on her bread instead of cheese I will ask her to say butter. It comes out "uu-uuh". I can get her to say the "B" but she still struggles with blending sounds. Still as I said she is trying. Eveyday things become clearer. And now that she is tuned into words she will learn quickly and improve quickly.

Last Thursday she was being a bit of a pickle. What else?! She had been climbing in a den we had made and lost her ears. One of the other kids found "Flower" but even after tidying up all the blankets and cushions we could not find Bird. Mary by this point was sat at the table wearing Flower and so I asked her verbally where Bird was. She clear as day said "Don't know!" Was totally fabulous.

Tonight she was lying in bed, without ears, and we were having a bit of a play and a chat. Then she signals for me to put my ear near her mouth. She whispered into my ear. Was so funny. I whispered into her ear tickling it. She thought that was hilarious. She definitley got a sense of humour. She will also say words without her ears.

Words:
awa (like a cockney Water)- water
oth- cloth
eeeeese- please
oa (oh)- toast
dont know
mama- mummy
taata - Katy
at- cat
ater- grater
go- go
ee veeee- TV

Big Girl Turn 4

Should have done this a week ago but well....

Mary Turned 4 on the 15 June. We had a big party in the hosue with 15 children in total in attendance. Mostly just a disco type affair, musical bumps and statues, make a sword or a crown, pass the parcel, a little picnic and lots of noise. Mary had a fabulous time. There was one minor strop when midway throught the party she wanted the TV one. But well what is a party without the strop. Looking at all the children you would not have picked Mary out. She had 2 of her Deaf friends in attendance too. They all mixed in and the other children were al happy to play.

Washing Machines and Cars

Yesterday, One of the most important dates in the calendar for the Shaw family, namely the birthday of Big Sister Katy, we were getting ready to go to Daddy's house. I was putting washing in the machine and Mary was helping. Then I notice she is making the "pshhhttttt" sound exactly as the water sounds when it first enters the machine. Her copying sounds is really coming on.

Once the washing had been sorted I then proceeded to get the girls and all their things ready. Mary kept insisting we were going by bike. I have purchased her a tagalong for my bike which she thinks is absolutely fabulous. So we have to cycle everywhere. Alas though Daddy's house is about 2 miles away and I have not yet plucked up the courage to do more than the school run and to the local shop. Not to mention Katy would have a epileptic fit if i suggested cycling so far and where would we put all the stuff! So as I was putting Mary's shoes on, she is avidly signing "bicycle" I say to her "No we are going in the car. The car." Pleasee note My hands were busy and so I was talking. I was also talking down not looking at her face. She immediately signs "car". So she heard and understood and showed she understood. Well done Mary. Then when we get in the car particularly if she is in the front she makes all the actions as if switching on and driving the car and the "rmmmmmm" noise of the engine.

Another step forward is that now we say "Shoooos offfff" whenever we come in the house and I ask all the kids to take their shoes and coats off. Mary thinks it is sufficient to say this and stick her foot up at me. But we are making progress. She does take her "shooooos offf" when the mood takes her.

Words/Sounds

Pssssshhhhhhtttt - water noise going into washing machine
Rmmmmmmmm - car
Shhhoooos offff - Shoes off

Aeroplanes, Trains and Wool

Last Thursday after feeling Mary was more deaf than she needed to be we had a tuning appointment at teh Emmeline. She performed brilliantly for the hearing test. I think we are finally grasping the idea of it all. She heard very well at 30Db in the middle frequencies but you could see her struggling to hear 35-40Db in the higher and lower frequencies. She also did each ear seprately which we have been unable to do previously. Anyway they turned her up and she is much more responsive and seems to want the ears on even more. She also likes them on in the car now.

Over the weekend she listened intently to Twinkle Twinkle and even sang "up above". Just the once but it was very clear.

Today when we got back from school drop off, her sister had gone for a hospital appointment of her own and this upset Mary greatly. She knows all about hospitals. Anyway she signed her sister's sign name and said "aty". For Katy! I do believe she understood where Katy was and was concerned for her.

Over the weekend I instigated a game of aeroplanes and trains and boats using the sounds from her SALT game, to try and get her to eat her protein. Still struggling with that a little but it is getting there. Anyway tonight she initiated the game herself. Going "aaaaaa" for the plane and "chooo choooo" for the train. She is so clever. And coming along so quickly now. She is signing more and more and pointing out things. Like the dog walking past the park yesterday. Was a distraction to me as she was being told off at the time for pushing another little girl over. But hey she pointed to the dog and signed dog.

Now to the wool you cry... Well she unravelled my ball of wool all over the lounge floor. I started to try and find the end so I can wind it up again and she started to "help". The last thing I needed. Anyway I signed "No" and said "No" both very firmly. After the 3rd time I really showed my anger. She did not like this at all so took herself upstairs for a time. Even these moments are good, showing she is understanding that she cannot do everything she wants to do. We did make up when she came back down because well, Tom and Jerry were on the telly.

What a wonderful day with Mary. She is even enjoying her homework these days.