It Looks Like Things Are Starting To Move!

Yesterday someone from out Housing Association came our to measure up all our external doors in preparation for changing them for the Aids and Adaptions needed to our home.

I was extremely impressed with the choice of door made available to us, we could choose the colour, window type, if I wished them to open outward or inwards and even if we would like a cat flap installed! It was like being in door choice heaven, well not really, but you get the general idea.

The workman wrote down everything I asked for and even added some notes to the job sheet when I asked for spacific things, like for the work to take place while Ana is at school.

So hopefully this is a sign that the much needed work on our home is about to start taking place. I hope the long wait has been worth it.

Wordless Wednesday - Titanic

Ana has got payback!

What an odd use of the phrase.

Ana has just returned from school and written in her home diary for lunch time is 'Ana has got payback for bullying another child and being rude to a member of staff.'

I do hope that mean that she was appropriately dealt with and they just didn't let the child or member of staff kick her in the shins

I can't get much out of Ana other then the fact she didn't do it. You'd be surprised at the amount of stuff that people didn't see Ana do. Anyway further questioning will result in a class 1 meltdown, so I have told her bullying and being rude is wrong and banned computer time for a week.

I have also told her I will speak to her teacher when I am at school tomorrow.

Ever want to hide and just come out when the kids have left home?

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!