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


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Computer time today has been revoked.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.