I got a reply from someone in Maria Miller's office.
It was the most long-winded non-reply to my questions that I have had yet! Sadly, I do not need an email explaining to me the criteria for a pre-school child needing a Blue Badge. My Daisy is 8. I said this in my opening paragraph. Nor do I need an email explaining how DLA and the Motability aspect work. I ALREADY KNOW!! I appreciate that higher rate DLA and Motability is for those with severely restricted mobility....but, as I explained in MY email, we are housebound without my car. My car works. It works fine. If I lost my car (through no fault of my own) we would be housebound. How much more restricted is there? I don't want to change my car, I don't need to, I just want the "safety net" of Motability IF I need it. Having it there cost nothing to anyone, but it gives me the peace of mind that no amount of money can buy.
I am really rather annoyed about it, and I'm not going to shut up and go away and go away until I get somewhere with this. Stay tuned.....!
Thursday, 27 May 2010
Wednesday, 26 May 2010
A bit of moaning might help?
I have emailed the Minister for Works and Pensions (Maria Miller MP) regarding the "rules" concerning Blue Badges and DLA.
I have made no secret of my dislike of this form and look forward to the new Government reforming it in the near future. Please make it soon, for all those poor people who still have to suffer it!
I have asked that carers of children like my Daisy be considered for a higher rate of DLA as although their mobility isn't restricted they pose a massive risk to themselves and others by their "super-mobility". My Daisy is (like many autistic childen) extremely sensitive to noise and will "bolt" when she is scared by an unexpected noise. This is bad enough in a store where maybe the anti-theft detector alarm will sound but a car alarm or even a car engine turning over outside the store will cause Daisy to "bolt" in a blind panic REGARDLESS of what danger she might be running into. Any car accident caused by this behaviour will never be the fault of the driver, but what consolation is that? To anyone?
Our only mode of transport is my car. Buses and trains are completely out of the question, they are unsafe, loud, unpredictable and involve waiting. Autistic children don't tolerate waiting very well at all. I have felt for a long time now, that we should automatically be eligible for a Blue Badge. Not just Daisy, but ALL the people who suffer from any condition that causes them to be a clear danger to themselves and others. I have a letter of recommendation from a specialist paediatrician supporting my claim, yet the department that deals with our DLA claim didn't seem to take it into account and I don't suppose for one moment that the department that deals with Blue Badge applications will either.
A higher rate of DLA (well, the right component at least) would automatically qualify Daisy for a Blue Badge and the Motability scheme. Both things we need. I am lucky enough to own a car that is only 3 years old and should give me many more years of service and reliability, but what if something beyond my control happens to it and it is written off? My insurance would not cover the cost of a new car and I can hardly down-grade for a cheaper model....I drive a Ford KA!
So....simply put we need the safety and security that a Blue Badge would offer in dangerous places and the knowledge that SHOULD I need a new car I can get one I can't begin to explain how difficult life would be for both of us if we had no car. It would be walking distance or nowhere. We wouldn't even be able to go to the supermarket....
I'm not a benefit-grabbing single parent out for everything I can get. I am simply trying to give my daughter the security that I feel she deserves....If I could find employment that allows me to earn enough to support us and take into consideration our circumstances then I would grab it with both hands.
I have already received an acknowledgement email from Maria Miller's office....
Looking good, 'cause that's more than I ever got from my local MP!
I have made no secret of my dislike of this form and look forward to the new Government reforming it in the near future. Please make it soon, for all those poor people who still have to suffer it!
I have asked that carers of children like my Daisy be considered for a higher rate of DLA as although their mobility isn't restricted they pose a massive risk to themselves and others by their "super-mobility". My Daisy is (like many autistic childen) extremely sensitive to noise and will "bolt" when she is scared by an unexpected noise. This is bad enough in a store where maybe the anti-theft detector alarm will sound but a car alarm or even a car engine turning over outside the store will cause Daisy to "bolt" in a blind panic REGARDLESS of what danger she might be running into. Any car accident caused by this behaviour will never be the fault of the driver, but what consolation is that? To anyone?
Our only mode of transport is my car. Buses and trains are completely out of the question, they are unsafe, loud, unpredictable and involve waiting. Autistic children don't tolerate waiting very well at all. I have felt for a long time now, that we should automatically be eligible for a Blue Badge. Not just Daisy, but ALL the people who suffer from any condition that causes them to be a clear danger to themselves and others. I have a letter of recommendation from a specialist paediatrician supporting my claim, yet the department that deals with our DLA claim didn't seem to take it into account and I don't suppose for one moment that the department that deals with Blue Badge applications will either.
A higher rate of DLA (well, the right component at least) would automatically qualify Daisy for a Blue Badge and the Motability scheme. Both things we need. I am lucky enough to own a car that is only 3 years old and should give me many more years of service and reliability, but what if something beyond my control happens to it and it is written off? My insurance would not cover the cost of a new car and I can hardly down-grade for a cheaper model....I drive a Ford KA!
So....simply put we need the safety and security that a Blue Badge would offer in dangerous places and the knowledge that SHOULD I need a new car I can get one I can't begin to explain how difficult life would be for both of us if we had no car. It would be walking distance or nowhere. We wouldn't even be able to go to the supermarket....
I'm not a benefit-grabbing single parent out for everything I can get. I am simply trying to give my daughter the security that I feel she deserves....If I could find employment that allows me to earn enough to support us and take into consideration our circumstances then I would grab it with both hands.
I have already received an acknowledgement email from Maria Miller's office....
Looking good, 'cause that's more than I ever got from my local MP!
Monday, 24 May 2010
Not a priority, apparently.
I home educate Daisy.
It isn't easy; it isn't something I undertook lightly and it isn't something that anyone can prepare you for. However, given our circumstances.....I had no choice.
When I removed Daisy from maistream school in 2009, I took the right advice and "de-registered" her. This tells the Education Authority that I intend to educate her outside of mainstream education. I was supposed to meet with the local Truant Officer....Ooops, sorry....Education Welfare Officer but that never happened. We played a great game of "Text Tennis" but never actually met.....
Then we moved house.
Apparently we are supposed to repeat the procedure all over again. Didn't know that, I assumed (ok, I know; my first mistake!) that one EA talks to another EA. They don't. So, I contact the EWO (which always makes me think of ChewBacca from Star Wars!) by phone, well actually I didn't initially as I called the office and she was out, but I left my name, address and number and was told I'd get some stuff in the post.
Two weeks later.....I called back as I hadn't heard anything (technically at this point I'm breaking the law by not registering Daisy with a local school) and was told that "no, we don't send anything out to you, you have to write to us with your daughter's name and date of birth and any contact names from your previous EA". So the person who answered the phone couldn't tell me this?? It's a dedicated phone number. So, I chat to the EWO and she says that her "inbox is very full" and that Daisy "isn't a priority".
WHY THE HELL NOT?????
Did I tell her that Daisy is autistic? No.
Should it make a difference? No.
Should any parent be told that their child isn't a priority? Of course not! She's a priority to me! I'm a parent, it comes with the territory for Pete's Sake!
I'm sure that the EWO's are busy. I fully accept that, but this one needs to learn to think before she speaks! I don't want to be told that my child is at the bottom of a very large pile.
I have written my letter, and casually mentioned that Daisy is autistic......I wonder if that will speed things up at all.....I await her reply with interest.
It isn't easy; it isn't something I undertook lightly and it isn't something that anyone can prepare you for. However, given our circumstances.....I had no choice.
When I removed Daisy from maistream school in 2009, I took the right advice and "de-registered" her. This tells the Education Authority that I intend to educate her outside of mainstream education. I was supposed to meet with the local Truant Officer....Ooops, sorry....Education Welfare Officer but that never happened. We played a great game of "Text Tennis" but never actually met.....
Then we moved house.
Apparently we are supposed to repeat the procedure all over again. Didn't know that, I assumed (ok, I know; my first mistake!) that one EA talks to another EA. They don't. So, I contact the EWO (which always makes me think of ChewBacca from Star Wars!) by phone, well actually I didn't initially as I called the office and she was out, but I left my name, address and number and was told I'd get some stuff in the post.
Two weeks later.....I called back as I hadn't heard anything (technically at this point I'm breaking the law by not registering Daisy with a local school) and was told that "no, we don't send anything out to you, you have to write to us with your daughter's name and date of birth and any contact names from your previous EA". So the person who answered the phone couldn't tell me this?? It's a dedicated phone number. So, I chat to the EWO and she says that her "inbox is very full" and that Daisy "isn't a priority".
WHY THE HELL NOT?????
Did I tell her that Daisy is autistic? No.
Should it make a difference? No.
Should any parent be told that their child isn't a priority? Of course not! She's a priority to me! I'm a parent, it comes with the territory for Pete's Sake!
I'm sure that the EWO's are busy. I fully accept that, but this one needs to learn to think before she speaks! I don't want to be told that my child is at the bottom of a very large pile.
I have written my letter, and casually mentioned that Daisy is autistic......I wonder if that will speed things up at all.....I await her reply with interest.
Thursday, 15 April 2010
Every Disabled Child Doesn't Always Matter....
A few weeks ago I (and many others) were approached by the Every Disabled Child Matters organisation to email our prospective parliamentary candidates to ask them, should their party win the up-coming election, to sign an EDM supprting disabled children and their families:
"In the lead up to the next General Election, I will be watching with interest to
see the commitments that you make for the political term ahead.
As a supporter of the Every Disabled Child Matters (EDCM) campaign, I ask that
one of the areas that you focus on in your time as an MP is meeting local
disabled children and their families and finding out about the services they
use. I also ask for you to raise any areas of concern in Parliament.
I therefore invite you to sign EDCM’s Constituency Pledge. This is a series of
five commitments that you are signing up to undertake if you are elected as my
local MP. The Constituency Pledge asks you to:
1. Meet with disabled children, young people and their families to discuss key issues of concern to them
2. Raise these issues of concern, and promote rights and resources, for disabled
children, young people and families from my constituency in Parliament
3. Visit local services for disabled children and their families on a regular
basis
4. Support measures to transform services for disabled children and their
families, such as the Aiming High for Disabled Children (AHDC) programme in
England
5. Find out how funding is being used in my constituency to improve services for
disabled children, young people and their families
If you agree, you can find out more information and download a copy of the EDCM
Constituency Pledge at www.edcm.org.uk/constituencypledgeppcs
Please sign it and send a copy through to EDCM either by post: Every Disabled
Child Matters, c/o National Children's Bureau, 8 Wakley Street, London EC1V 7QE,
email: info@edcm.org.uk, or by fax: 020 7843 6313.
Please could you reply to let me know if you will be signing the EDCM
Constituency Pledge.
Yours sincerely"
I received a very positive response from my Labour Candidate (John Piasecki) who readily agreed to sign the EDCM Pledge.
I received this from my Conservative Candidate:
" Thank you for your email.
My party's position on the issue you raise is as follows:
Whilst we share many of the objectives of the EDCM campaign, and are determined to build on this agenda, we need to be clear that due to the appalling state of the public finances, some of the specific pledges will need to be carefully assessed in a wider review of the public finances should we be fortunate enough to win the general election. We will not make unfunded commitments which we then might not be able to deliver. It is unfair to falsely raise the expectations of disabled children and their families.
Whilst we are not in a position to sign the Constituency Pledge, I thought it would be helpful to assure you that making life easier for disabled children and their families will be a priority for a future Conservative Government. That is why we have set out a range of positive policies which will aim to make a real difference to the lives of families with disabled children. These include:
increasing the number of health visitors;
simplifying the assessment process for accessing services;
making it easier for parents to access respite care;
looking carefully at ensuring that Local Authorities accurately assess children’s eligibility for Special Educational Needs statements; and
putting more power and control into the hands of parents and young disabled people themselves so that they can ensure that they receive the right care and support to best suit their needs.
The Conservative Party will continue to meet with EDCM on a regular basis and work constructively with them in the future to improve the lives of disabled children and their families.
Best wishes
Phillip Lee
I am still awating a reply from the LibDem representative!
To say that I am unimpressed with the response from the Conservative chappie is an understatement. I have always voted "blue" in the past.....that may well change.
"In the lead up to the next General Election, I will be watching with interest to
see the commitments that you make for the political term ahead.
As a supporter of the Every Disabled Child Matters (EDCM) campaign, I ask that
one of the areas that you focus on in your time as an MP is meeting local
disabled children and their families and finding out about the services they
use. I also ask for you to raise any areas of concern in Parliament.
I therefore invite you to sign EDCM’s Constituency Pledge. This is a series of
five commitments that you are signing up to undertake if you are elected as my
local MP. The Constituency Pledge asks you to:
1. Meet with disabled children, young people and their families to discuss key issues of concern to them
2. Raise these issues of concern, and promote rights and resources, for disabled
children, young people and families from my constituency in Parliament
3. Visit local services for disabled children and their families on a regular
basis
4. Support measures to transform services for disabled children and their
families, such as the Aiming High for Disabled Children (AHDC) programme in
England
5. Find out how funding is being used in my constituency to improve services for
disabled children, young people and their families
If you agree, you can find out more information and download a copy of the EDCM
Constituency Pledge at www.edcm.org.uk/constituencypledgeppcs
Please sign it and send a copy through to EDCM either by post: Every Disabled
Child Matters, c/o National Children's Bureau, 8 Wakley Street, London EC1V 7QE,
email: info@edcm.org.uk, or by fax: 020 7843 6313.
Please could you reply to let me know if you will be signing the EDCM
Constituency Pledge.
Yours sincerely"
I received a very positive response from my Labour Candidate (John Piasecki) who readily agreed to sign the EDCM Pledge.
I received this from my Conservative Candidate:
" Thank you for your email.
My party's position on the issue you raise is as follows:
Whilst we share many of the objectives of the EDCM campaign, and are determined to build on this agenda, we need to be clear that due to the appalling state of the public finances, some of the specific pledges will need to be carefully assessed in a wider review of the public finances should we be fortunate enough to win the general election. We will not make unfunded commitments which we then might not be able to deliver. It is unfair to falsely raise the expectations of disabled children and their families.
Whilst we are not in a position to sign the Constituency Pledge, I thought it would be helpful to assure you that making life easier for disabled children and their families will be a priority for a future Conservative Government. That is why we have set out a range of positive policies which will aim to make a real difference to the lives of families with disabled children. These include:
increasing the number of health visitors;
simplifying the assessment process for accessing services;
making it easier for parents to access respite care;
looking carefully at ensuring that Local Authorities accurately assess children’s eligibility for Special Educational Needs statements; and
putting more power and control into the hands of parents and young disabled people themselves so that they can ensure that they receive the right care and support to best suit their needs.
The Conservative Party will continue to meet with EDCM on a regular basis and work constructively with them in the future to improve the lives of disabled children and their families.
Best wishes
Phillip Lee
I am still awating a reply from the LibDem representative!
To say that I am unimpressed with the response from the Conservative chappie is an understatement. I have always voted "blue" in the past.....that may well change.
Young, Autistic and Stagestruck on Channel 4.
I looked forward to this programme SO much. At last...a much needed vault into the spotlight to show those "tutters" and blatant disbelievers EXACTLY what we have to go through on a day-to-day basis.
I have to say, it started well. The beautiful little girl called Mollie was having a bit of a melt-down and tearing round the garden in the way that PDA children do. Fantastic, I thought....this could be Daisy. Let's see how her mum deals with it.....no wait.....let's cut to another child displaying autistic behaviours, OK....I get that, all autistic people are different just like NT people.....now let's cut to Ben.....a fantastic kid who was far more intelligent than the person behind the camera who asked him some, frankly, idiot questions.
After that, it just got worse. Much worse. We we introduced to 2 directors from the Lyric Theatre who had never worked with Autistic people before. This showed. Much. They were deeply patronising and immediately set up a "them and us" sitation.
I was deeply annoyed to see that Mollie was allowed to take herself off and hide under a curtain. The camera kept returning to Mollie and showing her peeping out from under the curtain. The only point of this exercise was to make her look cute. I simply cannot see any other reason. Let's get this utterly clear: PDA ISN'T CUTE. It's nasty and pervasive. Not cute. Ever. If Daisy displayed that behaviour it would be because she was stressed to the hilt. You can't put a PDA child (I can't speak about PDA adults as I don't have one yet!) in a room full of unpredictable strangers and not get a reaction. A big, big part of PDA is their deep anxiety caused by not knowing what is going to happen next and their inability to predict what might happen. This is why Daisy is a complete control freak...if she is in control then she knows EXACTLY what is coming next. It would have been impossible for Mollie to be in control. Hence the safety of the curtain.
We were told that there was a team of specialised carers on hand at all times. Certainly didn't see any sign of them in Mollie's case. Where were they? Why were they not on camera? How much more enlightening for the audience to see just how much effort would have gone into helping Mollie. Maybe it just doesn't make good TV....
For the first time in my life I complained about a TV programme.
I will be watching again, though. If only in the hope that it will get better. There will never be any justification in causing an Autistic person undue stress though.
I have to say, it started well. The beautiful little girl called Mollie was having a bit of a melt-down and tearing round the garden in the way that PDA children do. Fantastic, I thought....this could be Daisy. Let's see how her mum deals with it.....no wait.....let's cut to another child displaying autistic behaviours, OK....I get that, all autistic people are different just like NT people.....now let's cut to Ben.....a fantastic kid who was far more intelligent than the person behind the camera who asked him some, frankly, idiot questions.
After that, it just got worse. Much worse. We we introduced to 2 directors from the Lyric Theatre who had never worked with Autistic people before. This showed. Much. They were deeply patronising and immediately set up a "them and us" sitation.
I was deeply annoyed to see that Mollie was allowed to take herself off and hide under a curtain. The camera kept returning to Mollie and showing her peeping out from under the curtain. The only point of this exercise was to make her look cute. I simply cannot see any other reason. Let's get this utterly clear: PDA ISN'T CUTE. It's nasty and pervasive. Not cute. Ever. If Daisy displayed that behaviour it would be because she was stressed to the hilt. You can't put a PDA child (I can't speak about PDA adults as I don't have one yet!) in a room full of unpredictable strangers and not get a reaction. A big, big part of PDA is their deep anxiety caused by not knowing what is going to happen next and their inability to predict what might happen. This is why Daisy is a complete control freak...if she is in control then she knows EXACTLY what is coming next. It would have been impossible for Mollie to be in control. Hence the safety of the curtain.
We were told that there was a team of specialised carers on hand at all times. Certainly didn't see any sign of them in Mollie's case. Where were they? Why were they not on camera? How much more enlightening for the audience to see just how much effort would have gone into helping Mollie. Maybe it just doesn't make good TV....
For the first time in my life I complained about a TV programme.
I will be watching again, though. If only in the hope that it will get better. There will never be any justification in causing an Autistic person undue stress though.
Wednesday, 24 March 2010
Political Animal
Well...if you look at the 3 "leading men" in the forthcoming election the only animal that springs immediately to mind is a small bewildered rodent! I mean....honestly! I have no doubt that their mothers love them very much and their wives are very supportive and they are all awfully nice chaps, but run the country? Oh, please! We need someone with "balls", and I don't think we have one!
Anyway, the reason for the political theme, is that the Tory party have "promised" (hmm, we all know what that means) to "simplify the benefits" system and change the Satan-Devised DLA form. Yep. This is a good thing, as I have said before I defy anyone not to want to swallow a handful of Prozac after filling out what must be one of the more confusing and depressing forms ever devised! BUT....it still isn't enough! Why must we fill out the forms every year anyway? It took 5 years and 7 forms for the DLA peeps to understand that Autism doesn't go away and that Daisy will be Autistic until the day she dies! If we get a diagnosis from a professional (and we must) and it is quite clear that the disability is lifelong, why must we continue to drag our emotions over broken glass every time, just so we can improve our children's lives? OK, if the situation changes then re-assess us. I would happily tell the DLA that Daisy no longer needs the level of care her condition currently demands, but it aint gonna happen anytime soon! She is becoming more of a threat and a danger the older she gets....
Why does it take an election to get MPs to promise to clean my bathtub with their own toothbrush if only I'd vote for them? Why do they only want to know what we want when they might get elected? People have been campaigning for YEARS to get changes to the benefits system, but only now (with an election a matter of weeks away) do they start to listen. It's not as if we weren't shouting loudly enough before either! It's not about money...that's another post entirely!...it's about simplification and disabled people being able to take care and take part in their own future.
Oh....the teapot is calling! may just have to indulge in a jaffa cake too!
Anyway, the reason for the political theme, is that the Tory party have "promised" (hmm, we all know what that means) to "simplify the benefits" system and change the Satan-Devised DLA form. Yep. This is a good thing, as I have said before I defy anyone not to want to swallow a handful of Prozac after filling out what must be one of the more confusing and depressing forms ever devised! BUT....it still isn't enough! Why must we fill out the forms every year anyway? It took 5 years and 7 forms for the DLA peeps to understand that Autism doesn't go away and that Daisy will be Autistic until the day she dies! If we get a diagnosis from a professional (and we must) and it is quite clear that the disability is lifelong, why must we continue to drag our emotions over broken glass every time, just so we can improve our children's lives? OK, if the situation changes then re-assess us. I would happily tell the DLA that Daisy no longer needs the level of care her condition currently demands, but it aint gonna happen anytime soon! She is becoming more of a threat and a danger the older she gets....
Why does it take an election to get MPs to promise to clean my bathtub with their own toothbrush if only I'd vote for them? Why do they only want to know what we want when they might get elected? People have been campaigning for YEARS to get changes to the benefits system, but only now (with an election a matter of weeks away) do they start to listen. It's not as if we weren't shouting loudly enough before either! It's not about money...that's another post entirely!...it's about simplification and disabled people being able to take care and take part in their own future.
Oh....the teapot is calling! may just have to indulge in a jaffa cake too!
Wednesday, 17 March 2010
Lawks! Where does the time go?
Well, we went off to the dentist again on Monday. I can't believe that it has come along so quickly!
Again...it was amazing! This time - despite declaring on the way there that she was going to "hide behind that cupboard again" - Daisy was outstanding! We had a guided tour of the surgery from admin to x-ray (see what I did there?!) and it was very interesting and enjoyable! Daisy answered questions (crikey! that's a HUGE step forward!) and even asked a few herself! It just goes to show that when my autistic daughter (I can't speak for all autistic children, obviously) is treated the right way, she is just brilliant!
Next time, she is going to learn how to make the chair go up and down and what all the instruments are for!
Well, that was the good news. Now for the bad! Daisy has been very very angry lately. She constantly flies off the handle for the smallest of reasons sometimes, and is sooo aggressive, violent and abusive. Part of it is that she isn't allowed to do something or what she wants to do is either impossible or totally impractical but she doesn't see that, and explodes. Big time. There is no reasoning with her, as that makes her worse, so she just has to be ignored. Which is very hard. If she was having an anxiety meltdown then I could hug her and give the attention and reassurance that she craves....but this? No way...get too close and she will strike out, it's only been pure luck that she hasn't hurt me so far. One day she will...and then what? The only way to avoid her violence and aggression at not getting her own way is to give in all the time, and that simply isn't possible. Sometimes it's too dangerous or it's a punishment or it just isn't possible (as in, I can't afford a Mongolian pony and it won't fit in the garden!).
She has injured me in the past, but that is different somehow....then it's always because I'm preventing her from "bolting" and I'm keeping her safe. I can understand her frustration at that, she simply doesn't see the danger. Meltdowns from sheer temper is something new. I see a trip to CAHMS looming........Sigh.
Again...it was amazing! This time - despite declaring on the way there that she was going to "hide behind that cupboard again" - Daisy was outstanding! We had a guided tour of the surgery from admin to x-ray (see what I did there?!) and it was very interesting and enjoyable! Daisy answered questions (crikey! that's a HUGE step forward!) and even asked a few herself! It just goes to show that when my autistic daughter (I can't speak for all autistic children, obviously) is treated the right way, she is just brilliant!
Next time, she is going to learn how to make the chair go up and down and what all the instruments are for!
Well, that was the good news. Now for the bad! Daisy has been very very angry lately. She constantly flies off the handle for the smallest of reasons sometimes, and is sooo aggressive, violent and abusive. Part of it is that she isn't allowed to do something or what she wants to do is either impossible or totally impractical but she doesn't see that, and explodes. Big time. There is no reasoning with her, as that makes her worse, so she just has to be ignored. Which is very hard. If she was having an anxiety meltdown then I could hug her and give the attention and reassurance that she craves....but this? No way...get too close and she will strike out, it's only been pure luck that she hasn't hurt me so far. One day she will...and then what? The only way to avoid her violence and aggression at not getting her own way is to give in all the time, and that simply isn't possible. Sometimes it's too dangerous or it's a punishment or it just isn't possible (as in, I can't afford a Mongolian pony and it won't fit in the garden!).
She has injured me in the past, but that is different somehow....then it's always because I'm preventing her from "bolting" and I'm keeping her safe. I can understand her frustration at that, she simply doesn't see the danger. Meltdowns from sheer temper is something new. I see a trip to CAHMS looming........Sigh.
Thursday, 25 February 2010
On a Mission
Well, I've finally got around to something I have been meaning to do for ages.
I am off on a journey (around the houses, I strongly suspect!) to discover if I can get the "rules" of DLA changed. Quite possibly it would be easier to scale Everest in flip-flops but, I can but try!
The reasons are quite simple.
Daisy is "recognised" as being Autistic by the folks at the DLA office. We/she were assessed again via that Devil-sent form which is enough to have me reaching for the Prozac and it was decided (quite rightly too) that Daisy is always going to be disabled and will not improve so we no longer have to fill in the form on an annual basis.
That was a bit of a painful moment, I have to admit. I mean I know it already, but it still stung
Anyways, with slightly thicker carapace than when I started, I asked why we weren't eligible for the higher rate of mobility as Daisy is a danger to herself and others and we NEED a blue badge. She is a "bolter" and will go in any direction on impulse and will also try to push me into the paths of moving cars if she is in melt-down and I need to get her to safety.
The answer I got was because she doesn't have RESTRICTED mobility we don't qualify. I understand this, but I don't accept it. Her uber-mobility makes her more of a danger to herself and others than anyone with restricted mobility. She is akin to a small frightened animal and will run anywhere she can to get away from whatever it is that has spooked her. She is very nervy around cars as they tend to start their engines (well, at least the drivers do!) and she doesn't know when it's going to happen.
The people who work for the DLA department, can't help me as they only follow the rules and don't make them. So, here starteth my quest.......Let's see what I can achieve for autistic children and autism awareness. Wish me luck.....I'm going in!
I am off on a journey (around the houses, I strongly suspect!) to discover if I can get the "rules" of DLA changed. Quite possibly it would be easier to scale Everest in flip-flops but, I can but try!
The reasons are quite simple.
Daisy is "recognised" as being Autistic by the folks at the DLA office. We/she were assessed again via that Devil-sent form which is enough to have me reaching for the Prozac and it was decided (quite rightly too) that Daisy is always going to be disabled and will not improve so we no longer have to fill in the form on an annual basis.
That was a bit of a painful moment, I have to admit. I mean I know it already, but it still stung
Anyways, with slightly thicker carapace than when I started, I asked why we weren't eligible for the higher rate of mobility as Daisy is a danger to herself and others and we NEED a blue badge. She is a "bolter" and will go in any direction on impulse and will also try to push me into the paths of moving cars if she is in melt-down and I need to get her to safety.
The answer I got was because she doesn't have RESTRICTED mobility we don't qualify. I understand this, but I don't accept it. Her uber-mobility makes her more of a danger to herself and others than anyone with restricted mobility. She is akin to a small frightened animal and will run anywhere she can to get away from whatever it is that has spooked her. She is very nervy around cars as they tend to start their engines (well, at least the drivers do!) and she doesn't know when it's going to happen.
The people who work for the DLA department, can't help me as they only follow the rules and don't make them. So, here starteth my quest.......Let's see what I can achieve for autistic children and autism awareness. Wish me luck.....I'm going in!
Wednesday, 24 February 2010
Oooh.....done it now!
Yes.
I did it.
I finally grabbed both my courage and the moment and told Daisy that The Yellow One is no longer welcome in our house.
SpongeBob is banned!
What kind of an evil mother am I?!
Well, for the benefit of the tape:
I am tired of the continuous references to you-know-who.
I am tired of the repeated efforts to relive entire episodes of that programme....complete with voices.
I am very tired of the echolalia associated with Square Bob. It is NEVER as bad as when he has infiltrated our living room.
I have had quite enough of being spoken to like I am the stoopid one (aka Patrick) and not the pink cartoon character.
If I have to go looking for my spatula one more time because she has made off with it to grill "Krabby Patties" with I swear they will have to send round those very nice and sympathetic people in the white coats!
So....I told her.
"No more" I said. "SpongeBob is banned. Your attitude sucks."
Possibly the last comment was a bit out of order, but it worked. No hissy fit, no begging (I was dreading that!) no nothing.
Frankly, I'm a bit worried now!
It's never been this easy before......
I did it.
I finally grabbed both my courage and the moment and told Daisy that The Yellow One is no longer welcome in our house.
SpongeBob is banned!
What kind of an evil mother am I?!
Well, for the benefit of the tape:
I am tired of the continuous references to you-know-who.
I am tired of the repeated efforts to relive entire episodes of that programme....complete with voices.
I am very tired of the echolalia associated with Square Bob. It is NEVER as bad as when he has infiltrated our living room.
I have had quite enough of being spoken to like I am the stoopid one (aka Patrick) and not the pink cartoon character.
If I have to go looking for my spatula one more time because she has made off with it to grill "Krabby Patties" with I swear they will have to send round those very nice and sympathetic people in the white coats!
So....I told her.
"No more" I said. "SpongeBob is banned. Your attitude sucks."
Possibly the last comment was a bit out of order, but it worked. No hissy fit, no begging (I was dreading that!) no nothing.
Frankly, I'm a bit worried now!
It's never been this easy before......
Saturday, 20 February 2010
D Day
That's "Dentist Day" to the uninitiated.
Not, as you previously thought, Thursday.
It started early....about a fortnight earlier to be more precise, so that I could really saturate Daisy with references to D Day. We had to change the appointment time to 9am so that we could be first in with no waiting around. Daisy doesn't "do" waiting. Oh, and then we had to check that the dentist was female, as otherwise it would have been a HUGE waste of time for everyone.
D Day arrived and began at a very Daisy-Unfriendly 7.15am. I was waiting for being thoroughly told-off for disturbing her beauty sleep but was pleasantly surprised by her need to listen to the alarm clock going "beepity beep beep beep". My interest in the noise wore off far earlier than hers, but at least she was awake and happy......sitting on the sofa watching.....yep. The Square Yellow One.
After the usual minefield that is getting dressed we ended up at the dentist EARLY!!
At this point I have to say that the dentist was FABULOUS!!!!!! She didn't mind that Daisy spent the whole 30 minute appointment in the waiting area. She wasn't fazed that Daisy squeaks and barks and growls and tries to bite if she is stressed. She was interested in PDA and understood it straight away and didn't look at me as if I was the one who was barking....!
OK...so she never got to see Daisy's teeth, but it's all about trust. Daisy will get there, this dentist knows the difference between goats and sheep!
Roll on our next appointment!
Not, as you previously thought, Thursday.
It started early....about a fortnight earlier to be more precise, so that I could really saturate Daisy with references to D Day. We had to change the appointment time to 9am so that we could be first in with no waiting around. Daisy doesn't "do" waiting. Oh, and then we had to check that the dentist was female, as otherwise it would have been a HUGE waste of time for everyone.
D Day arrived and began at a very Daisy-Unfriendly 7.15am. I was waiting for being thoroughly told-off for disturbing her beauty sleep but was pleasantly surprised by her need to listen to the alarm clock going "beepity beep beep beep". My interest in the noise wore off far earlier than hers, but at least she was awake and happy......sitting on the sofa watching.....yep. The Square Yellow One.
After the usual minefield that is getting dressed we ended up at the dentist EARLY!!
At this point I have to say that the dentist was FABULOUS!!!!!! She didn't mind that Daisy spent the whole 30 minute appointment in the waiting area. She wasn't fazed that Daisy squeaks and barks and growls and tries to bite if she is stressed. She was interested in PDA and understood it straight away and didn't look at me as if I was the one who was barking....!
OK...so she never got to see Daisy's teeth, but it's all about trust. Daisy will get there, this dentist knows the difference between goats and sheep!
Roll on our next appointment!
Wednesday, 17 February 2010
Oh.....like THAT is it??
OK.....I am mildly aware that the world outside is having a few financial problems. I'm not completely out of touch. Well, actually that's not strictly true as I was out of touch earlier today as my ISP, in their wisdom, decided to suspend my services. Despite the fact that I was.......yeah, IN CREDIT!!! Argh. I said. Then I said some more 4 letter words. Then I called them, only to be told that the payment I made was charged to my account and not taken off it! Blimey, that's a new one. So the end result is that I get my services reconnected and I get a free upgrade. Apparently this makes my pooter go faster. Time will tell. The up-side of this is that we also "lost" the cable channels on the TV. The entire morning was a Sponge Bob-free zone. Words do not exisit to convey the extreme dislike that I have of the yellow fellow. It is rarely funny, never educational and frequently just purile. Why on earth does Nick Toons persist on showing the Yellow One all day every day through the half-term holidays? What about the kids who DON'T like the Yellow One? What about the poor parents who have to listen to him? Hell, WHAT ABOUT ME?????!!!!! Bad enough that he has taken over the TV, but Daisy runs the length of the house, rock-pooling net raised above her head, "buzzing" and catching jelly-fish! She hasn't named the net "Ole Reliable" yet.......
Monday, 15 February 2010
Well...this is it. My first blog. I'm a blog virgin!
OK...Now I've calmed down I guess some introduction is required? Well, for the benefit of the hard of thinking, this blog is about Daisy. She's Autistic. The clue is in the title. It is something I find myself HAVING to say on a regular basis to those people who assume that Daisy and I are some kind of free entertainment, and that's it's perfectly acceptable to stare and point and laugh at us when poor Daisy is having a melt-down and I am getting beaten-up. Maybe I should take a hat out with us and pass it round the crowd? All donations to the National Autistic Society!
Daisy is now 8 years old and was diagnosed with PDA/Autism when she was almost 5. Oh, never heard of PDA? OK...neither had I. It's Pathological Demand Avoidance syndrome and it does exactly what it says on the tin. Daisy would rather die than comply. Not because she won't but because she can't. It just looks like won't. So she appears to be a total spoilt brat, but in fact is simply a very anxious frightened little girl who is desperately struggling with the world around her.
She is educated full time at home, by yours truely. I can honestly say that removing her from school was the best thing I could have done for her as she was becoming ill and would have had a breakdown. She has made great progress in the year since she left school and can read and write with enthusiasm which was sadly lacking when she was at school!
Well, the excitement has quite worn me out AND it's Daisy's bathtime....so TTFN!
OK...Now I've calmed down I guess some introduction is required? Well, for the benefit of the hard of thinking, this blog is about Daisy. She's Autistic. The clue is in the title. It is something I find myself HAVING to say on a regular basis to those people who assume that Daisy and I are some kind of free entertainment, and that's it's perfectly acceptable to stare and point and laugh at us when poor Daisy is having a melt-down and I am getting beaten-up. Maybe I should take a hat out with us and pass it round the crowd? All donations to the National Autistic Society!
Daisy is now 8 years old and was diagnosed with PDA/Autism when she was almost 5. Oh, never heard of PDA? OK...neither had I. It's Pathological Demand Avoidance syndrome and it does exactly what it says on the tin. Daisy would rather die than comply. Not because she won't but because she can't. It just looks like won't. So she appears to be a total spoilt brat, but in fact is simply a very anxious frightened little girl who is desperately struggling with the world around her.
She is educated full time at home, by yours truely. I can honestly say that removing her from school was the best thing I could have done for her as she was becoming ill and would have had a breakdown. She has made great progress in the year since she left school and can read and write with enthusiasm which was sadly lacking when she was at school!
Well, the excitement has quite worn me out AND it's Daisy's bathtime....so TTFN!
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