Is this what it's like to be 'normal'?

I haven't been updating lately and the truth is there hasn't been much need to.

Ana's behaviour has been exemplary. She has been doing well both at home and school and has received several merits for her schoolwork.

What's our secret? I wish I knew, but I have the feeling that this may well be the calm before the storm!

The Occupational Therapist has been!

She's a really nice lady, likes cats, so she must be good.

She was astonished at the shoddy work they housing did for the last OT brief for the side door. Apparently it does not meet the brief set out at all and she thinks she may have to 'ride them hard' to make sure they actually do the work to standard. Good and bad really, there are some areas she cannot help with in the kitchen as Ana isn't classed as using the kitchen, but that will change as she gets older.

Things we are getting :-

A shower woooooooooo! No more running baths at 2am or in the final minutes before school.

A douche toilet (sounds lovely that doesn't it) so Ana can wash and dry her bottom as she has difficulty wiping and I still have to 'polish'

A second hand rail on the stairs

A special door to Ana's room that cannot be slammed

Special magnetic lockable doors to the kitchen and the side of the house that are linked to the fire alarm system (no more walking round like a jailer)

A hatch way to through to the living room from the kitchen so when I am cooking/washing up I can still 'be in the living room'. Also helpful for passing dinner through so I don't have Ana bouncing in the kitchen next to the cooker and hot pans.

A referral to the incontinence team for discrete pads so I don't go through tons of knickers.

Excellent when all we asked for was a shower and the side door sorted.

The OT is also going to research other implementations that can help Ana.

Part of me is so happy that we're now getting the help, another however will believe it when it sees it. I also wonder how Ana will react to the work going on and the new stuff. Being restricted from the kitchen will be a big change (only restricted when I am unable to supervise to stop the stealing of food, she ate a whole multibag of plain crisps the other week while I was hoovering upstairs)!

The long wait is finally over - ish

Today we received a letter in the post from The Occupational Therapist asking us to contact her so she can arrange an appointment to visit us. We've only been waiting 18 months for this moment.

Due to Social Services involvement in moving us from our previous home, due to issues with Ana's noise sensitivity. (we lived in a flat under very noisy neighbours, which caused Ana to start self harming, including pulling out her eyebrows, eyelashes and most of the front of her hair). It was decided that a referral to the Occupational Therapist would be made so that changes to our new home to assist with Ana's needs could be made before we moved in.

We've been living in our new home since February 2008. Better late then never I suppose.

Finally we will be able to get the much needed repairs done to the side door, special cupboard locks fitted and a shower installed. Over the past 18 months we have been asking for our Housing Association's help with these matters and sadly all we have received are empty promises, the accusation that I am just a lazy mother and I don't supervise my children enough and even one well informed member of the Housings Association's staff telling me that Autism is not a real disability. I strongly suspect that this particular person also believes that wheelchair bound people are just too lazy to walk.

At least now we will have some clout when we ask for the minor adaptations we need just to make life run a little smoother.


On another note Ana respite care when extremely well, yet the carer was unable to tell me when she would be free for the next session as they days are changing from a Thursday to a Saturday due to Ana going back to school. She assured me that she was going to the office as soon as she left our home and would ring when she gets there to let me know. No phone call.

I have left messages both on the carer's voicemail and with Summacare. Again this pushes me to think that the respite we do receive isn't worth the hassle to arrange it every fortnight. I hate feeling so trapped and useless. You fight so hard to get something that it hardly seems fair to turn round and say, nope, don't like it.

And breathe.....

It's so frustrating!

I know that it only the second week of Ana's respite care through Summacare, but let's just say it isn't want I expected it to be.

Social Services painted a lovely picture of Ana being able to go out with another adult to do the things that her peers take for granted. The things that sadly we are unable to do due to limited resources and time.

However the Buddy that has been teamed up with Ana cannot drive, nor knows our home town very well. Nothing really wrong with that and I cannot really fault her with the way she interacts with Ana, but it puts serious limitations on what Ana and her Buddy are able to do.

There is really very little for pre-teens to do in our town and you really need to travel further a field to find activities that are suitable for Ana. I am beginning to run out of things that Ana and her Buddy can do within the distance they can travel for her 3 hours a fortnight without really eating in to her expenses budget.

Another worrying point is I have no number to contact Ana's Buddy on. I have left messages for her to contact me on the numbers I do have so I can tell her Ana wants to go swimming tomorrow, but I have heard nothing back.

Yet there is a part of me, the part that doesn't like to rock the boat, that is convincing me not to bring these points up with either Summacare or Social Services. It seems a little ungrateful doesn't it?

I have no experience of this!

A new Anaism

The other day while I was bathing Ana she noticed three grey hairs on my head (the shame). She asked me why my hair was turning white. I told her that every time she made me upset or angry one of my hairs would turn grey.

Ana thought about this for a moment and then said.

"Great nanny must have been really angry!"

What a success!

Yesterday Ana went on her first respite care session with her 'buddy' Danielle.

They went to the cinema to see Ice Age 3: Dawn of the dinosaurs in 3D. Upon entry it was discovered that every time Ana goes to the cinema with a carer the carer goes free, so that leaves more money in the budget for her other outings.

Ana was exceptionally well behaved and the whole thing was a complete success. That has gone some way to relieve my worries. Strange as it may seem before Ana went on her respite session I got rather upset that Danielle would be getting to do all the nice things with Ana that I am just not able to.

Her next session is on 27th August and I think its safe to say that we're both looking forward to it

Finally Respite Care!

Ana has finally been granted fortnightly respite care for 3 hours. Summacare will be providing the carer or buddy as they are called, who will be taking Ana out and about for the 3 hours.

After the risk assessment her first outting is sheduled for Thursday 13th August.

I guess I'd better knuckle down and research things to do in the local area.

The summer's started early, thanks to Swine Flu!

Yesterday I received a letter in Ana's school bag informing me that there has been a confirmed case of Swine Flu at school.

A member of staff had been taken ill earlier in the week and it was decided due to there only being a few days of the term left that the summer holidays would start early.

Oh joy!

Missing!

Missing!

The lovely, sunny little girl I used to know.

Last seen, going through puberty.

The B Word

Today I was aghast to read in Ana's Home - School Communication Diary that she had 'sworn at a member of staff.'

Upon questioning Ana to get more details I was told that she couldn't remember anything. Handy that. Again I asked her what was said.

'The B Word'
'What B word?'
'You know B something.'
'B something what?'
'Bitch!'

Her reasons for doing so? The teacher was moaning at her because I hadn't got round to ticking a box on a piece of paper to say whether I would be attending the Easter Parade or not.

Wear Something Funny For Money. Red Nose Day 2009

Today was Wear Something Funny For Money Day at Ana school in aid of Red Nose Day 2009.

Ana wore her pirate monkey pjs, dressing gown and furry monster feet slippers. The thing she was most excited about, apart from the cake sale later in the day was getting to wear her furry monster feet slippers in class.

Hello? It's The School Calling!

I don't know what's been up with Ana and her behaviour lately, but she has had a clear case of the naughties. Both myself, my husband and even my parents suffered her moods and strops over the weekend but I was sure she had got it all out of her system by the time Monday morning came.

Alas no! This afternoon I received a telephone call from Ana's class teacher. She informed me that not only had Ana again gone on an escapade when asked to do something that didn't fit in with her plans, but she has also today slapped another child on the arm.

I have no idea what the teacher expects me to be able to do at the other end of a telephone line, but she kept repeating that she was only calling to let me know what had gone on and it was all dealt with there and then. Well it's nice that the teacher thinks I feel the need to know absolutely everything that Ana gets up to during class time, but sometimes I wish they didn't bother.

Yes, call me if there is an emergency, if Ana has hurt herself or has gone missing for a sustained amount of time, but stop tittle tattling!

Looks like another day of no computer time for Ana. Will she ever learn? No, quite frankly, she won't!

Sorry We Are Closed!

So I awake early this morning to be greeted by an overnight winter wonderland. 4-5 inches of snow fell in the night and it's still coming down. So I positioned myself in front of the radio and tuned into 2-10 fm and listened to the lists of school closures.

In the meantime Ana was sat in her school uniform waiting.

Then came the news she was waiting to hear. School's Closed!

Heaven help us!

Sore Lips

Ana has been sucking her lips again making them red, cracked and sore. I have my suspicions that she's doing it absentmindedly whilst playing on her Nintendo DS Lite.

I guess the time has come to limit her useage of it. That should go down well, like a ton of bricks!

Anaism of the Week!

'Jesus was made on Christmas Day and saved the world by Easter. I wonder what he did for Halloween?'

Notes

Another interesting note in Ana's Home/School Diary tonight.

"23-01-09

Ana put her coat down in the mud at playtime and it was next to a puddle. Therefore it is really dirty."

However after having washed Ana's sodden coat I have a feeling it was a lot closer to the puddle then they're letting on.

Well, that's a relief!

So today at 10am we finally got to have our meeting with Ana's class teacher over a few issues including the recent biting.

It only took the school a month to get back to us to arrange the meeting. Ana's social worker called me yesterday to check everything was still going ahead, she then also told me that her line manager would be attending the meeting due to the seriousness of the issues being discussed.

I hadn't actually met the line manager until today, but he was the person I spoke to when Ana was bitten for the second time and also the time the school lost her for 15 minutes.

I'm not a big fan of meeting, so this wasn't something I was really looking forward too. I usually become overwhelmed and end up just sitting there nodding occasionally.

Well, I went and I survived!

I did feel like the big bad wolf however as the class teacher turned up on her own and there were three of us. The poor woman was shaking while talking to us.

Anyway it was a very positive meeting, we got to put our points across and Miss S was able to tell us what actions they had already put in place or were going to to prevent the issues we discussed arising again.

Apparently the school is in the process of trying to get funding so that the child that bit Ana can have one to one supervision at all times. Social Services are now going to push that forward for them. At the moment one of the class's teaching assistants is giving the one to one supervision.

Other points that were raised at the meeting was changing Ana's Statement to suit her current needs (her statement has remained the same since she started school) and the fact that she is displaying signs of Dyslexia which the school is now looking into. By the end of the meeting we were all relaxed and felt that we had discussed everything we needed to.

Now I feel I can draw a line under this all and start looking forwards towards Ana's annual review in March. Hopefully we'll be able to set some wheels in motion and get her the help she so badly needs in class

The Signs Are There!

Sick to death of going into the bathroom to find that Ana either hasn't bothered to turn the light off or flush the toilet after herself I have decided to place a few gentle reminders around.

It's the same for all of us!

Last night as I put Ana to be she said something to me.

"Mummy, when I get up in the morning I am very tired and I don't want to get out of bed. But in the night I am wake awake and I don't want to go to be."

It's the same for all of us sweetie!

I don't think there are many people that enjoy having to get out of bed in the morning, especially when it is still pitch black.

Back to school!

Today Ana went back to school after the Christmas holidays. New term, new start. However Ana wasn't entirely chuffed at the idea of having to go back and to be honest I'm not either. Somehow I know that it is just a matter of time before someone becomes distracted and Ana is again through no fault of her own injured.

Our children annoy us sometimes and we have all been guilty of looking forward to the break that school gives us, but even so, you do not send your child to school so they can be attacked by their classmates.