Ana Through The Looking Glass

RAWR! - Parenting Pre-Teens

2010-12-11T17:31:00.002Z

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Computer time today has been revoked.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

2010-10-13T08:02:00.000+01:00

Filling Out The Dreaded Forms

2010-09-19T15:37:00.005+01:00

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?

2010-06-10T08:00:00.001+01:00

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

2010-06-09T08:00:00.001+01:00

So Tired Of Fighting

2010-06-08T10:18:00.003+01:00

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

2010-04-02T08:00:00.002+01:00

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!

2010-04-01T08:00:00.005+01:00

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

2010-03-31T11:56:00.002+01:00

Ana has got payback!

2010-03-25T15:53:00.000Z

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'?

2009-10-29T13:34:00.000Z

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!

2009-09-04T13:26:00.000+01:00

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

2009-08-28T16:54:00.000+01:00

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!

2009-08-26T20:45:00.000+01:00

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

2009-08-16T09:00:00.001+01:00

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!

2009-08-14T21:27:00.000+01:00

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!

2009-08-02T12:59:00.000+01:00

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!

2009-07-22T14:08:00.000+01:00

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!

2009-05-20T14:23:00.000+01:00

Missing!

The lovely, sunny little girl I used to know.

Last seen, going through puberty.

The B Word

2009-03-24T16:35:00.001Z

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

2009-03-13T18:09:00.000Z

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!

2009-03-09T14:10:00.000Z

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!

2009-02-02T10:36:00.000Z

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

2009-01-30T16:45:00.000Z

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!

2009-01-26T12:05:00.000Z

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

Notes

2009-01-23T20:27:00.000Z

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!

2009-01-22T15:39:00.000Z

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!

2009-01-11T16:35:00.000Z

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!

2009-01-09T11:55:00.000Z

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!

2009-01-05T12:54:00.000Z

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.

Bitten again!

2008-12-16T16:36:00.000Z

We had just returned from watching Ana perform in her school play when I received a message on my mobile. Ana has been bitten again by the same class mate! After social services expressed it's concerns about the lack of supervision in the class room you would have though that the teachers and classroom assistants would be on high alert.

I can only thing that I can think of is with the disruption and the excitement of the school play that they weren't as attentive as they should have been.

Allowing a child to be bitten in such a way once is unfortunate, twice is down right careless!

Again I had to get Social Services involved before the school would even speak to me let alone address my concerns. which went along the lines of, 'We're keeping a very close eye on the children and it won't happen again.' Now, do correct me if I am wrong here, no really, speak up, don't be shy. But weren't you supposed to be keeping a very close eye on them the last time Ana was bitten and wasn't it not going to happen again? So what changed? Did the mulled wine and mince pies come out and distract you?

Unfortunately due to the school holidays starting on Friday there is little myself or Social Services can do until the start of next term. Other then sending Ana in wearing a chain mail tunic!

The Christmas Fairy

2008-12-16T16:20:00.000Z

Today Ana performed the lead role as The Christmas Fairy in the school Christmas production, The Important Guest. She did really well and only had trouble with one line. This was due to her being too busy prompting the Reindeer with a well placed jab in the ribs.

Amen!

2008-12-05T10:30:00.000Z

Today I received a link to a Daily Mail article detailing Autism from a sibling's point of view. I makes for very interesting reading.

http://www.dailymail.co.uk/you/article-1089568/8216-My-brother-I-worlds-apart-8217.html

The paragraphs that I can relate to most are;

A high-functioning autistic like Rupert is, in some ways, harder to accept than someone more severely disabled, as at times they seem so tantalisingly close to normal. My mother says she always felt that if she tried hard enough, she'd find the key to 'unlock' my brother and everything would be fine.

Unlike Down's syndrome, which is easily recognisable in sufferers, autism has few physical signs.

There have been many times in the past that I have wished that Ana had some outward sign of a disability. After all no one questions why a Down's Syndrome person is not 'normal.'

I fear that throughout her life too much may be expected of Ana simply because she doesn't look any different from anyone else.

Bitten! Cont.......

2008-12-05T10:16:00.000Z

I would like to make it clear that I do not blame the child that bit Ana in any way. I know the child personally and I know she would have had no understanding why biting Ana was unacceptable or that it would have hurt Ana.

Yes I am very upset she was bitten, after all we hope our children are happy and safe in school.

What I am annoyed about was that first of all both children were allowed to get into a situation where another one was bitten. Ana's class has 9 students, 1 class teacher a 3 special needs trained teaching assistants. So it's not like a class of 30 and one teacher having to have eyes in the back of her head.

No one contacted me at the point Ana was bitten, it was simply written in her home school diary. Something Ana doesn't always remember to bring home.

I have contacted the school both through her home diary and via phone. No one has called me personally to even tell me how the biting happened. I did however receive a few lines in the home school diary that stated.

'Sorry you weren't informed earlier about Ana's bite. I am afraid I was off sick yesterday + we were a little short staffed. We have filled in an incident form and will keep a very close eye on Ana and the other child. The bite was through 2 layers of clothing so no bodily fluids were involved.'

Fair enough, but I have requested three times now that Ana's teacher contacts me. It's only common courtesy to do so.

I have since written a letter of complaint detailing the lack of communication and requesting again that some one contact me or an appointment is made so I can speak to the staff personally. I thought I would be polite and request a meeting before I march down there and set up camp. Only fair to give the school the opportunity to try and resolve this.

I have since found out the the incident report regarding Ana's bite was not filled out until the following day.

This is the same school that tried to 'integrate' Ana into a mainstream school environment. Which consisted of two afternoon sessions before they dumped her at the school and washed their hands of her. The ignored my pleads to take her back when the systematic bullying started and then only took her back when the other school couldn't cope.

Bitten!

2008-12-01T13:15:00.000Z

Should I be upset?

Would you be?

Today Ana came home from school to tell me that during drink and biscuit time (morning break) she was bitten on the shoulder and the teacher had written in her book.

Sure enough there was a statement in her home - school diary that simply stated

'Unfortunately Ana was bitten today on the right hand shoulder. We applied and ice pack for 10 mintues which took away some of the swelling, Ana was very brave.'

So there's me thinking a simply case of she'd been nipped by another child and had a red mark or even at the worst some teeth marks.

'Show us your bite then.' I said to Ana only to be confronted by the picture above.

I had no idea the bite was that bad and according to Ana at the time she was bitten she was wearing her shirt and sweatshirt. I know Ana attends special needs school and there are children there will problems, but I would have expected a phone call from the school.

At last a dencent school photo!

2008-11-28T16:33:00.000Z

Could have brushed her hair though!

Disheartened Today

2008-11-20T13:21:00.000Z

Ana has decided to pull off most of her right eyebrow this morning causing it to bleed profusely.

Thankfully we managed to stop the bleeding before transport turned up this morning. I think she may have done it because she didn't get her hour of computer time last night for misbehaving.

She has also been pinching her own arms causing huge nasty dark purples bruises.

It gets very upsetting, she has such a lovely pretty face yet most of her self harming is centered around her face. I have school photos of her where she has scratched off most of the skin on her forehead or she as chewed and sucked her lips until the surrounding skin is red raw.

Ever feel like you're in a sinking ship and all you have a bail out with is a sieve?

Those amusing home - school diary comments

2008-11-19T16:41:00.000Z

Today's comment:

'Ana has been having some 'little' (read that as nuclear reactions) temper tantrums and arguments with us about particular toys she wants to play with (before her work is done).

She also keeps tripping herself up on purpose and walking around on her knees in class. I have spoken to her several times and tried to explain why this is not appropriate or safe.

Is she like this at home?'

My reply:

'Oh goodness, yes!

It drives us to distraction. Until now we thought that this was an activity reserved for home.

As yet we haven't come across and effective way to stop the behaviour without causing it to escalate. I have also tried to explain that flopping around the house like a fish out of water and scooting around the house on her knees is not safe at the best of times nor an effective form of transportation.

Any attempt to talk to Ana about the above is met by her sliding off the sofa onto the floor.

This has only started recently and at first I put it down to the poor weather and increased boredom. But now I believe we may be deep within the throws of teenage tantrums.'

Honestly some days I only have to open my mouth to speak to Ana and she goes silly!

Shoes!

2008-11-18T15:25:00.001Z

I really should update this blog more often. I started it as an escapism, a place to go when the difficulties of raising and autistic child become too much. I suppose it's those same difficulties that have been preventing me from updating as much as I would like.

Anyway, on to the real reason I am writing this post.................

Shoes, yes shoes.

Yesterday Ana came home from school in another (yes I did say another) pair of ruined shoes. The soles had been ripped from the shoes and now slapped about as she walked around in the hallway of our home. This wasn't a simple case of the soles becoming unglued or a case of shoddy workmanship. No they have been torn away with such force that the mind only boggles at the activity she could have been doing at school to cause such wanton destruction.

The mind also boggles how Ana managed to get through a day at school and then come home on her transport and no one noticed the state of her shoes. Or perhaps they did, but didn't think it warranted my attention.

When I pressed Ana as to what she was actually doing at the precise moment her soles became detached from the rest of her shoe, the answer put forth was. 'I don't know, I can't remember.'

I know there are some mysteries of the autistic mind that I will never understand, but I would have thought the soles being ripped from your shoes wouldn't have gone unnoticed during your day.

Anyway, I have since purchased the third pair of shoes for this term alone and they will be given, along with the warning. 'Ruin these and you shall go to school with black bin liners on your feet!'

I don't hold out much hope, that way I am rarely disappointed.

Hip, hip hooray, it's back to school today!

2008-09-04T10:36:00.000+01:00

Today Ana went back to school. *listens* *Sound of crickets chirping* It's it wonderful? Anyway I took some pictures of her today all smart in her uniform waiting to go. She won't look like that when she gets home though.

To say that these past summer holidays have been difficult has been an understatement. The combinations of poor weather, little to do and raging hormones (Ana's not mine) have left me wanting to tear my hair out. I can only hope that next year will be better or that soundproof children's cages become available on the NHS.

Of course not to be out done Amy had to get in on the act too.

Tamagotchi Invasion

2008-08-17T15:46:00.000+01:00

I am actually amazed at the amount of time Ana is spending playing with her new Tamagotchi family. I cannot see the what all the fuss is really. Still the peace and quiet is nice while it lasts.

Sometimes I hate being the parent of a special needs child

2008-08-16T22:13:00.001+01:00

And I don't care who knows or what they think of me.

I am sick and tired of all the tantrums, of being terrified of saying something that will set of the next big melt down. Innocent sentences such as , 'Could you please put some knickers on?' and, 'Can you tidy your bedroom?' I spend and ex ordinate amount of time walking around on eggshells

I get fed up of of being stuck in the middle of people on opposing sides. I really don't care how you would manage that particular scenario better or that a damn good smack will sort her out, because it won't. I know, I've tried!

I am forever doomed to spend my life washing pooped in clothes, or wiping bottom of a 10 year old. Will I still be doing this when she is 20?

Everything has to be arranged round Ana and her condition always having to make extra concessions and arrangements for her. I am unable to say 'sod it all, why don't we just go out somewhere nice today,' without planning of military precision

I am loath of all the stares and questions. This is not what I had in mind when I decided to have a baby!

Why is it the summer holidays seem to last forever?

First Karate Lesson

2008-08-16T22:05:00.000+01:00

Yesterday Ana attended her first Go Jan Ryu Karate lesson. Which almost didn't take place due to her purposely tripping her little sister up, causing her to sprain her leg, ankle and hit her head on the floor.

After the ensuing rage from Ana we decided to let her go as long as she promised to behave herself in future and keep her bedroom tidy (two things of which she has failed miserably to do today)!

The lesson didn't go as badly as I was expecting. Ana was over excited and her tendency to babble inanely got the better of her, but towards the middle of the lesson she had actually managed to stop talking long enough to listen and in fact learn a few things. We shall have to see how things go.

Let's get the party started!

2008-07-18T15:52:00.000+01:00

Yesterday we attended the retirement party of Ana's special needs paediatrician Dr Milne. For the past eight years this woman has been a God send and was a major factor in finally getting Ana diagnosed with ASD. While we are wish her well with her retirment and in her furture we will miss her greatly. She was such a large part of our lives and the lives of many other special needs children and their families in out community.

A wonderful touch was the memory book that was presented to Dr Milne in a 'This Is Your Life' style. All the families with children in her care sent in photos, hand written notes and cards thanking Dr Milne for all her help throughout the years. I honestly think that with out her many of us would have given up hope years ago.

Good Luck Dr Milne, we shall miss you!

A new class and hopfully new beginnings

2008-07-16T16:26:00.000+01:00

And so the end of another term draws to a close.

Although it must be said that Ana has made some fabulous progress ever since she started in 2A there have been some very low times. Still she has generally managed to pick herself up again and end this term on a high note.

Today was the first day of 'transition' where the children that will be starting in a new class at the beginning of the next term spend time in their new class. This is to help them get used to the change gradually so there should as little disturbance as possible once the summer holidays are over. Also it allows the children to get used to their new form room, their new teachers, assistants and class mates.

I am cautiously optimistic for next term as Ana is no longer in the same form class as L. Both just seem to rub the other up the wrong way. Also there was a very detailed write up in Ana's home school diary today about what class she is now in and the names of her teacher and assistants. Hopefully this is a sign of things to come.

There is one down side to all of this. Ana's best friend G will be moving up to the Secondary school side of things next term. I just hope the change doesn't upset things too much.

And so the blog is born

2008-07-15T14:28:00.000+01:00

Out of necessity more then anything else really. Autism is still not really understood and the differences between two people on the Autistic Spectrum can be vast. While I have some wonderful friends and a truly supportive family it is simply impossible for them to be able to relate to the sometimes vast and frightening range of emotions I feel.

This blog is here so I can get some of those feelings out. A form of release if you will. Someone who will listen and not judge.

Raising a child with Autism can be a very scary and lonely experience.