15 April, 2009
Busy Busy Busy
So much is going on at the minute. It’s Easter holidays from school, and Ellie is booked right up with places to go, people to see and things to do, its hard to keep on top of it all! I, as always, have a tonne of paperwork that is outstanding and needs to be completed, and I am now having to think very carefully about how I go about dealing with the LEA. You see, they have messed up again, sending confidential information to the wrong person. I really really want to get a solicitor involved, but we can’t pay for any service we have, at the minute we are just flat broke. I am just not sure what I should do.
You know, if other people got on with their jobs correctly, my life would be so much easier. Not easy you understand, just easier.
3 April, 2009
People
I have had a few mixed experiences with people recently. Someone who I thought it was worth trying to get to know, has proved to me that actually, they aren’t worth it. I should be pleased I learned this before I got too fond of them I suppose. It has to be said, I often lament my poor judgement when it comes to people. Some other people have been using me as a sounding board, telling me all about how unfair things are for their children. Uh….hello? You think your kids have a tough time? I am not the person to moan to about this.
I say the experiences are mixed, because in addition to the people mentioned above, I recently met up with an old friend, someone I haven’t seen for 7 years. I have to say, meeting up with her and her family again was just the best fun I had had for ages. He children are lovely, and her daughter got on really well with Ellie, even though at the start of our day she was a little shy. We had such a lovely day out, the only sad thing being that they live abroad, and we don’t know when we will be able to meet again.
Some people just aren’t worth the effort, but every now and again you find people who are truely special. In truth, there are so many people in my life, and only a few are truely special. I hope you know who you are, and if you don’t, I’m sorry I haven’t pointed it out to you. I promise to do better.
24 March, 2009
Dreams
Last night I had a very vivid dream. I dreamt I had just found out I was expecting another baby. I was so excited, but was already suffering a bit from nausea, which I knew would be getting worse. I knew the baby would be born in February, and I was not looking forward to being as big as a house over Christmas…..again.
When I woke up, I just allowed myself to think about what it would be like to have another baby, all the great things like the first smile, the first word, when they sit up for the first time, hearing them say ‘Mummy’. And then I got on with the business of the day.
After this morning, which consisted of me shouting at Ellie 3 times to eat her breakfast, her wanting to do her homework at the most inappropriate time, trying to dress Tabitha, and falling over her numerous times because she was following me around like a puppy and tripping me up, I have now been reminded why we are sticking with 2 children only.
12 March, 2009
I collected Tabitha from Pre-school today, and they told me that she had been a madam. Her carer was black and blue from being kicked with her heavy boots, and she had totally ignored every instruction today, as well as completely ignoring people she didn’t want to interact with. My first thought was, How the hell will they cope at school when she has days like this?
Ellie on the other hand, brought a little boy home from school to play today. We haven’t had a boy back before so it was a bit of a jump into the unknown. I am pleased to say it went well. He was a lovely little boy, and the two of them were off playing really nicely. When his Mum came to collect him, I told he was welcome to come again. And I meant it!
10 March, 2009
LEA’s
We are having to go through the process of Statementing for Tabitha to start school in September with the support that she will obviously need. Well, we think the support she needs is obvious, and the school think it is too, but the LEA don’t seem to believe she needs it. I mean, how they can say that a 4 year old who is oxygen dependant and developmentally only around 2 years old, and who is non-verbal, doesn’t need full-time, 1:1 care and support while she is at school?? So, they have dug their heels in on the issue, mainly because if they say she needs 1:1 support they have to fund it, and we are being just as stubborn saying she has to have that written in her statement, to ensure she is safe at school.
There are other issues as well, like their refusal to name the correct school to meet Tabitha’s needs, simply because then they would have to help fund us to get her there every day, and there appalling administration of the department, which has led to them sending confidential information to the wrong school.
We are now taking them to Tribunal to get this sorted out. If they want to play hardball, thats fine. At the end of the day, without 1:1 support Tabitha won’t be safe at school, and I can’t take her anywhere she isn’t safe.
21 November, 2008
Cheeky madam.
Tabitha may not yet be able to speak, but she has plenty of other ways to show us her personality. Yesterday, she was sitting in her chair at the dinner table, and making a fuss while we were all trying to eat. One of the things she was doing was pushing herself up using the footplate on her chair, so she was standing in it, not a very safe way to be at all. I told her a few times, in a stern voice to sit down. I then figured, actually, she is responding to sign, I’d better sign it too as I say it, so about 4 times, I told her again in the stern voice, to sit down, and I used the sign.
Not only did my daughter not sit down, she looked me straight in the eyes, and signed “sit down” back to me. It put me in a difficult position. She was being defiant, which needs to be watched and challenged, but she had also just used a new sign, which she should be praised for. I honestly didn’t know how to react. In the end, I put my hands on her shoulders and sat her down, then praised her for signing. I hope that was right.
Today, she has learned to cross her eyes. She was again in her chair at the meal table, when she just started crossing her eyes and giggling to herself. It is actually very funny to watch, I should get her doing it on video. It does have us in fits watching her, and Tabs being Tabs, when she gets a reaction like that, she will keep doing it.
Two very positive aspects of my childs personality. Not the only two, but two good ones. She is determined and funny. 🙂
17 November, 2008
Gaining Speed
Tabitha’s signing is improving rapidly. She can now sign “Mummy”, “Daddy”, “Dog”, “Cat” and the old favourite “please”. She beeps her nose during the rhyme “The wheels on the Bus”, and claps her hands during “Wind the Bobbin up”. I now need to make sure I can remember all the signs I learned when I did the Communication course a year ago…..and I’m sure a lot of them have gone from my mind.
I am getting better in the new car now, not so nervous. Of course, that’s when things get dangerous and you are most likely to do something silly like reversing into a tree or something. Fingers crossed I don’t do anything like that.
We are currently waiting for Tabitha to develop her sickness again. It is likely to be any day now. She showed signs of getting it last Thursday, but it hasn’t yet developed fully. Unfortunately, I have no doubt that it will. In fact, thats 2 new signs I need to teach her, ill and pain, so she can tell me when she is getting poorly. That will help her no end with her frustration during her sick times.
Anyway, time to get on with the evening routine now, making feed up, getting it ready for tomorrow, so I’ll sign off now. Bye!
9 November, 2008
Ups and Downs
The last 2 weeks have been full of ups and downs, all to do with Tabitha. The major up is that Tabitha has finally made the connection between signing and communicating at last. This means she is now learning new signs and what they mean and she is is beginning to use them independantly, ie, if she wants something and you ask her “what do you say?”, she will sign please. It’s a major step.
On the down side of things, we have begun to find exostoses on her. These are bony growths that her genetic condition causes to grow on her skeleton. Whether the surgeons remove them or not is dependant on how much they are bothering her, and where they are. I’ve heard of babies having them found by the age of 7 months, so for Tabs to get to nearly 4 before we found any is a good thing I think. But it is just a bit of a downer, because I was hoping (stupidly I know when they are a defining feature of her syndrome) that she’d be spared them.
We have finally been in to get her eyes checked too. The eye checking process actually took no more than 5 minutes, but because Tabs needed to be sedated for it, we were in hospital for 6.5 hours. Ayway, her eyes were checked and are fine thank goodness. Another box checked. The funniest thing about the procedure was seeing Tabs response to the sedative. Within 5 minutes of having it, she was unable to sit up, and she was giggling away to herself like a lunatic! I laid her on the bed, and she just lay there, laughing and staring at her hands. I did ask if I could have some too, but noone seemed to want to give me any…..:(
So that’s all the news for now, I’ll be back on again soon. Bye for now.
28 October, 2008
Sleep Deprived
Tabitha has been going through her usual vomiting spell for a while now, and yesterday we thought she was all but over it. Turns out we were wrong. After being up changing nappies, clothes and bedding at 2:30 and 3am, we turned off her feed and waited for her to go to sleep again. She finally went off at about 3:45. Then Ellie had a bad dream at 4am.
They shouldn’t be called children, they should be called “sleep destroyers”.
26 October, 2008
A New Car
Yesterday I collected a new car from a dealer. A BRAND new car that is. One that only had 7 miles on the clock when I got in it. It is on the Motability scheme and we have only got it because of Tabitha’s disability. I love the car, but I am finding it nerve-racking driving it around. I still have a lot of getting used to it to do. Well, I’ve only driven it 28 miles so far……
Diary of a Family 