RAWR! - Parenting Pre-Teens

People are always telling what a lovely polite, well mannered, delightful and happy young lady I have in Ana.

Where? I hardly ever get to see her! I mostly get the spitting snarling beast, who takes any suggestion that she may crawl out of her pit and do something as a personal affront.

We have had a lovely 'discussion' over her 'right' to computer time.

Ana is allowed an hour of computer time if she

1) Keeps her bedroom tidy

and

2) Behaves towards myself, DH and her sister in an appropriate manner.

Today, not only has she refused to tidy her room properly but she has stolen and half eaten her sister's Milky Bar.

Last night she was given a Milky Bar, same as her sister but because Amy was unwell and didn't want to eat it, I put it on the top of the cupboard in the kitchen (where sweets are kept).

When Amy asked for it this morning, I got it down to discover only half of it remained. Where the other half should have started was a large bite mark. Unless we have some rather large mice knocking about on the tops of our cupboards there can be only one culprit

Computer time today has been revoked. Apparently this is unfair because

1) She only ate half of it and left some for her sister.

2) Amy was unwell and didn't want to eat it. So by rights it should have been passed to the next sibling in line. Her.

3) She has now tidied her room, (Read: Kicked all the crap under the bed) so according to the ancient laws of 'I shall do what the hell I like' I am required to give in.

I have pointed out that the fact she has cleaned her room and only ate half the bar is neither here nor there. She knew she was doing wrong as she went to great pains to re-wrap the Milky Bar and disguise her clandestine munchings.

I am now being treated to stomping feet, slamming doors and snide under the breath growlings.

Later she slithered down the stairs and enquired as to whether she could have a treat. My answer of, 'you've already had a treat today, half a Milky Bar,' did not go down well and resulted in elevated banging and stomping.

Wordless Wednesday - Pussy Cat, Pussy Cat, I Love You

Filling Out The Dreaded Forms

It's that time again.

The dreaded Disability Living Allowance Renewal. To say that I hate filling out these forms would be an understatement, but unfortunately they are a necessary evil to ensure that Ana gets what she is entitled to.

Somehow there is always a small part of myself that feels like I am trying to get something that we're not entitled to. What can I say, I guess I am just one of those people that feel permanently guilty, even when it's not my fault.

Anyway enough about my regular guilt trips, something that seems to go hand in hand when parenting a child with special needs, back to the DLA forms.

How I wish there was a simple tick box that states 'Yes, my child still has Autism and is likely to do so for the foreseeable future.'

Every time I worry that I will write something down incorrectly or omit to add something extremely important. You see, Ana is my first child, so I have little to compare her against when it comes to 'normal' children of the same age. Also a lot of Ana's behaviours are, to me, completely normal. After 12 years of parenting these little 'quirks' are part of your day to day life and so becomes normality. It is very probable that there are things I don't include on those forms, which I should, but to me are just the normal day to day running of our family.

It would be immensely helpful if they would also do away with those awful questions, 'How many minutes does your child need help with this?' I don't know! I get on with it, I don't carry a stop watch hung around my neck so I can time myself. What if I put down too much time, or too little?

This occasion I was lucky enough to have a copy of Ana's Occupational Therapy Report to hand, which I can send along with the DLA forms as further evidence of Ana's difficulties and needs. But, seeing them written down in back and white has made me realise just how much more work Ana is to care for and supervise then her four year old sister.

Tomorrow I shall post off Ana's DLA forms and hope that that is the last I see of them for some time.

NHS - Failing children with Autism?

Recently I have read an interesting report detailing that, The NHS is 'failing children with Autism.'

It is believed that children with Autism are having unconnected mental health issues misdiagnosed as 'unfortunate or unavoidable side-effects of autism.'

Even when issues have been correctly identified often the help is unavailable or in some shocking cases so inappropriate that they in fact make the child's mental health worse.

What makes this all the more frustrating is that the large majority of these mental health issues are easily treatable with the correct understanding, something that seems surprisingly lacking in the NHS.

I have mixed feelings on this. As we all know the NHS is a largely underfunded and overstretched service which has the patients best interests mostly at it's heart but has it's hands tied with red tape and over worked staff forced to spread themselves too thinly.

I fought hard against the NHS for seven long years before someone would listen to my concerns about my daughter and I was no longer labelled an 'attention seeker' but once we got that diagnosis so much more help opened up for us. Without it Ana wouldn't be able to enjoy respite care once a fortnight, where she gets to mix with other children and be herself without the constraints of what society expects. For that we are very very grateful.

When the NHS get it right they do the most wonderful even miraculous job. But sadly when they get it wrong or fail to listen the effects reach far and deep into the lives of those that need their help and understanding the most.

What are your thoughts and what experiences have you had with the NHS and Autism?

Wordless Wednesday - Sisters

So Tired Of Fighting

For once in my child's life I would love for her to get the help she is entitled to without having to fight tooth and nail for it. It that too much to ask?

Evidently it is.

Back in September 2009 after a very long referral process we finally got a visit from an Occupational Therapist to help us with some minor Aids and Adaptations we needed to our home that would not change Ana's life dramatically, but make it that little bit easier.

Our main requests where for, a substantial lockable door for the open side passageway to our home, to reduce the chance of Ana wondering off or leaving the house without my knowledge and an over the bath shower for help with personal hygiene.

Credit where it is due, the side door work as been completed and I really couldn't be happier with the end result. It is just a shame that it took over two years of constant badgering before the Housing Association would admit that a bodged shed door was hardly what the brief had asked for.

It was hoped that the shower would have been installed before Ana started her periods, unfortunately that milestone as come and gone. Ana coped amazingly well, but the use of a shower would have made things easier and helped Ana feel cleaner (she disliked the thought of sitting in the bath during her cycle).

The last time I heard from the Housing Association on the state of play was back in the beginning January when the man in charge of the adaptation works stood in my living room and promised me in person that the works would take place in the next 7-10 days. Clearly they operate in a different time zone then the rest of us. Repeated attempts to contact him remain fruitless

The last time I heard from the Occupational Therapist's office was back in March when after several attempts to contact her I was told that she was no longer dealing with our case as she had since moved onto Adult Occupational Therapy. Not to worry though, as our new OT would contact us soon to introduce herself.

This has all become extremely frustrating, especially when the Housing Association's website and other associated documentation clearly states.

"Minor aids and adaptations

• We will complete minor aids and adaptations within 31 calendar days of receiving a brief"

I have finally had enough of fighting and have given both the Housing Association and the Occupational Therapist one last chance to contact be by the end of the week before I pass my frustrations onto my MP.

Watch this space.

Autism Awareness Month

Today is the start of Autism Awareness Month and we will all be wearing something blue to show our support.

More people need to be made aware of autism, it's signs and the difficulties it poses both to sufferers and their careers.

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!

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.