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.