Thursday, 1 April 2010

Consent

Before C was 18 I was always able to give parental consent to things. Now he is an adult – I can’t. It hasn’t been an issue till now.

We went to the dentist (hospital dentist that we waited over 6 months to get the appoinment)! And no surprises C did not let the dentist anywhere near him.
C has gum disease (you can see it when he gives one of his enormous smiles) Teeth cleaning he can’t do himself and depending on his mood depends how long he will tolerate a brush in his mouth. Diet over the years has been very poor. And he has acid reflux (which affects teeth as do some medications). He does not always show when he is in pain. I explained all this. But the dentist was very negative.

The NHS has a responsibility to ensure equality of provision of care to all groups in society. There is published evidence that people with disabilities are at risk from higher levels of oral health problems, they tend to have fewer teeth, more untreated decay etc.

So if they know this - why so evasive? Maybe the look of horror on the dentists face when she saw C head banging explains it?!

A week later the dentist got back to us and has called an in best interest meeting.  To see if it would be in C’s best interest to have a general anaesthetic or just to leave him till he tells us he has a problem. But of course we would somehow have to work out that it was his teeth making himself injure.

We also have to prove C’s lack of capacity in making a decision. It is assessed on if he cannot do one or more of the following: (He cant do any)
Understand information given to them about the decision.
Retain the information for long enough to make the decision.
Use or weigh up the information as part of the decision making process.
Communicate their decision by any means such as talking, sign language or blinking.


This is from the Mental Capacity Act (MCA DOLS) which were introduced in 2005 after a man with autism and learning disabilities was prevented from leaving hospital. His carers took the case to court where it was found he was deprived of his liberty unlawfully. So to prevent further breaches and provide legal protection for vulnerable people who may need to be deprived of their liberty in their best interests, the MCA DOLS were put in place.

There is an easy read version here which actually uses a case like C’s and they did agree to a GA. I know there are risks attached but trying to look at it from C’s point of view the risks from his head banging are greater.

So if C is granted this we are also going to ask ‘permission’ to cut his nails.
If C were a real person  he would have the same privileges as neurotypicals and not have to prove his capacity or have best interest meetings (in 2 months time!). Or have to ask to cut his nails! He would just be treated.
~
When C reached 18 as he cannot manage his own financial affairs I applied to the DWP to be his appointee and manage his benefits. It was very straight forward. (I also applied for a passport and a joint bank account before he was 18)

(UK) Power of Attorney, this must be set up with the persons consent whilst they have the capacity to choose who they would like to appoint.
If this is not possible a different process is followed and you need to apply to the Court of Protection to become a Deputy.
But there is a bit of a back log.
~ ~  ~
Can I ask – do people who work with your child know that you blog? Did you tell them or did they find out? Has it changed their relationship with you? C’s home maybe finding out I blog from an article that I have written and I know they get the publication. So should I be open with them??

And no C hasn’t said anything else :(

68 comments:

Vi said...

since you are getting articles published, I think you should let C's carers blog, as you aren't being negative about them, just constructive! It could help them!

jess said...

jen, the way i see it, the more people in c's life that read the blog the better. seeing how tenderly you love him, how much you respect him and his needs .. i just don't think that can be bad.

nearly everyone in my daughter's life reads my blog - from her teachers and therapists to the principal of her school. i think it's had a huge impact on the way that they see her and how much more they understand about us as a family. though our circumstances are vastly different, i can only imagine that the result would be similar.

Alison said...

Best of luck with the GA for C, I am sure he will do fine, its just us that worry ourselves silly! O has had 4 GA's now for dental work and an MRI, the only problem is its a huge ordeal because we have had to hold O still for the GA injection, with gas and air of course, but getting him to breathe in the gas and air and tolerate the mask was also an ordeal. Its just not fair our children have to to go all of this, so so reluctant to have these GA's carried out but we absolutely had no choice.
At his MRI they also took much needed bloods to check for fragile X, amino acids and so on - all ok. Thinking of you xx

BenefitScroungingScum said...

I understand your fears about blogging linked to your real identity, but I think it's a really good thing. For too long disabled people have been without a voice, and blogging gives us that voice. I believe much of the difficult behaviour we have to deal with from medical professionals or care staff is because of a lack of understanding about how their actions impact on others, not because they are uncaring (for the most part) The records we leave through blogging will be an increasingly important record of the changes made and still needed for disabled people to reach full equality.
GA sounds like it's in C's best interests, as he's a bit on the bendy side perhaps it's worth getting them to check how stable his TM joint is as that can become very painful and perhaps be another reason to headbang.
Good luck with it all, and love to you and C, BG Xx

The author said...

Actually you have hit upon a problem I have with a lot of parent blogging.

Fortunately I was born in a pre internet era, so that in whatever way, I or my brother were exhibited in the past was one confined to the immediate social circle of friends and family of my parents.

One never expects that way to meet oneself coming back if you know what I mean. Or do you?

I do recall some years ago going to a local autistic support group, all parents, to see what it was like. I didn't know anyone in the room, but one guy seemed to know me. In fact he told me how, in that he used to drink with my dad in the same pub and so had heard a lot about me from my dad.

I have no doubt that I would have been even more embarrassed had I been able to read what my dad had said in a blog.

I do know that my parents concept of me was not the same as I would necessarily share of myself, just as my brother's perception is not either. I guess I occasionally trespass on his integrity when I put his pictures up or mention him in posts although he does not have access to the internet, who is to say that one day one of his aquaintances will not tell him that he saw his picture on facebook or whatever.

Of course with my parents the irony is the other way, I have some regret that I have spoken of my dad in harsh terms as I know that others who knew him have been to my site, indeed I found a picture of him on a site about the Coventry Music scene, that had been taken from my site, there is no other way anyone could have got it.

As for my mum, I put her on the internet while she was still alive, in that I created a web site for her, which is now still there as her memorial. The site and a lot of the other stuff that is on it, was a collaboration between us, in the ideas are hers but the actual words and phrases sometimes mine because she liked the way I could put things in images and preferred them to her own more prosaic expression.

Niksmom said...

Sending thoughts your way for successful lobbying to get the work done under GA.

Good luck and good health to C!!

starrlife said...

Oh what a difficult process but I can see why it is necessary actually since all parents of any kind of kid are not always as thoughtful and caring as yourself, unfortunately! I agree with Jess about the blogging and as for the GA- he can have meds that sedate him prior to process to make it less stressful and not fight. I do think it is worth it to have since gum disease can lead to dire medical complications- and you might as well try to get as much done as possible while he's out! Do you think/project he will be grateful for the care /relieved physically on some level and happy that his nails are shorter? Or will he be freaked out and angry?

Beth said...

And so, your battle continues – for the care and humane treatment for C in all aspects of his life. It just shouldn’t be this way – for either of you.
(Just re-read this & thought of my own on-going battle – it seems I’ll never lose that sense of “life isn’t fair” – although I should know better by now. It isn’t)
Wishing you continued strength and patience – I know you possess the fierce and amazing mother-love to persevere – but there are times you must get weary.

farmwifetwo said...

After the abuse my Grandparents went through at the hospital before they were moved into long term care... I'd rather prove it time and time again.

Just being treated... isn't what you want.

bobbie said...

Wow! Here's a problem I had never anticipated. Those of you with children who are totally uncooperative in medical situations must worry yourselves sick.

I agree that C's carers should know about and read your blog. Surely they, and C, would benefit from it. Your posts are always so constructive and your concerns clearly described.

The GA sounds to me like the only way to go, but my opinion cannot mean much, since I have never been faced with such a decision.

I think of you often, and pray for you and C. Wish you all the best.

Jen said...

If the blogging thing came up in my life I would just ignore it unless they asked if you wrote the article. So many people blog these days that they probably won't be surprised that you do too. I hope C gets the GA. Jen.

Mrs. C said...

I don't think it's DIShonest to blog. It might be immoral if you were to gossip about the horrid outfit Miss Suzy Smith (or whoever) wore last Saturday and that sort of thing. But otherwise? I would wait for the question to come up and answer with a cheerful, "Yes! I enjoy making friends this way very much."

I had always thought that people got a medical decision-maker who decided everything, and that it's assumed the closest relative fills in. Isn't that how Terri Schaivo died? It was assumed that the husband had the best interests at heart. Most of the time, parents and spouses have wayyy more interest than the state. The exceptions shock us!

I think C will feel much better if his nails are cut while he is asleep. From what it has sounded like before, he doesn't object to the short nails, just the PROCESS of cutting nails.

Jenn said...

I feel so guilty because I was just complaining that one of the gentlemen in my care had general sedation yesterday for a cleaning, although he has sat through having fillings many other times.I shouldn't be complaining about what others have to fight for.
The reason for the general was bacause he became a little agitated the last time I took him in and tried to get up while getting a shot.
I explained to the dentist I do the same thing!!!
I am glad you are so supportive and vocal for your son. I believe it gives other family members the strength to do so as well.
My thoughts are with you and C, I hope all goes well and that he can get his needs met. As they should be!!!

nitebyrd said...

Your love and ability to fight for C is boundless. I do hope that you'll meet with success with having C treated.

Stimey said...

Good luck! I know that you will find a way to do what is best for C.

As for blogging, some of the people who work with my guy know I blog. I don't think all of them do, but I try to write as if they were reading over my shoulder because I don't want my words to affect his care. I also try to write in a manner that will not hurt him if we ever had to go to court over services, etc.

The author said...

Apart from the ethics of blogging about someone who is not you, with regard to teeth cleaning, it is a nasty brutal business.

The time before last when I went to the Dentist, the dentist just set about it and kept on urging me to relax my lips, open wider and all that. Well I just could not relax my lips, the muscles wouldn't let me, because the whole experience was too damn painful. So in the end I told him (in that way one communicates to dentists when they are messing about inside your mouth) that enough was enough. I didn't want it doing anymore.

During my last visit to the dentist similar ensued, I said I was not willing to have it done again without a local anaesthetic, so I have had to make a seperate appointment for that sometime in the future.

Having lost teeth in the past due to letting them get too far before I went to the dentist it is the case that even people with acknowleged mental capacity will not unerringly act in the best interest of there oral hygeine.

E said...

Your blogs are filled with love and integrity. My intuition says you have nothing to fear from more readers closer to home

lime said...

it's disturbing to me to think that whether c is 18 or not they are abrogating your parental role in that you know him better than anyone else and are the one person most capable of understanding the ways in which he does communicate and that you clearly have his best interest at heart.

as for the last post, how very exciting!

Akelamalu said...

I don't see that anyone could take umbridge with what you write on here m'dear.

It's diabolical that you have to jump through hoops all the time to get the best care for C, you have my admiration.

Green Girl in Wisconsin said...

I agree with the other comments--your blog posts are so objectively written, compassionate and understanding.
I never even thought of something as basic as a dentist appointment being a major issue once he's an adult. Wow.

Debs said...

I can't see how anyone connected to C could be offended by anything you write as you always explain everything so well and only ever want the very best for him.

Cheri said...

I have never read anything in your blog that you should feel concerned about. You have never written anything that would reveal the identity of the the people who work with C. I have written about Zach and have no idea if any of his care people read it. He has had some things to say about it, though, so now I have to measure what I write. That's only fair.

In the US when a disable child gets close to 18, the parents can petition the court for guardianship. I didn't do that with my son because he can make decisions for himself. But if it hadn't been that way, I definitely would have sought guardianship so that I could make sure he was getting the care he needs. I think it's unfortunate that you are having to fight to continue to make sure you son is getting the care he needs.

Dr. Deb said...

I think blogging is very powerful and if it can help "out" certain missteps in the health field, the world is better for it.

Tanya @ TeenAutism said...

You are always so diplomatic that I think it would be beneficial for C's carers to read your blog! As for the dentist - "just to leave him till he tells us he has a problem" - was he serious? I hope that things get sorted out soon and that C's medical needs are met properly. Sending love to both of you.

DJ Kirkby said...

N3S's teacher's know I blog and one of them reads my blog regularly.Does it make a dfiference to how he gets treated at school? No idea. I hope the decision is made to allow C an GA so he can get his mouth (tooth pain is the worst) and nails sorted! xo

Suburbia said...

Difficult questions, I can't help but hope all goes well for you both

Get Off My Lawn! said...

Don't go out of your way but don't hide it. Tell them if it comes up. It is not supposed to have a bearing on the level of C's care, right? It might be good to have the shadow of a hammer.
Icidentally, happy autism awareness month.

Ron said...

Hello Dear Casdok~

If anything, I think it would be extrememly benefical for C's carers to read your blog.

Everything that I've ever read on this blog has been nothing but eye-opening awareness. I've learned a plethora of knowledge from you, as I know others have.

You speak the truth, dear lady. And the truth should be heard.

Please know that I'm always sharing much "good energy" and love with you and C.

X

The Dotterel said...

Oh my, it's so difficult... but then, you might expect trained health professionals to have a little more understanding and empathy than the dentist appeared to have at C's first appointment.

Fascinating questions about blogging and anonymity, and I've enjoyed reading everyone's comments.

Personally, I have none (anonymity) which I sometimes think is a problem. But then, the reasons for that aren't anything to do with me and aren't to do with things that should be happening. So I tend to take the 'I'm damned (and I probably will be!) if I'm going to change for the sake of idiots and perverts' approach.

CrackerLilo said...

I don't see anything malicious about C's caretakers, and I think it's probably good that you blog. I think it helps to establish that you have allies, if need be. You help those of us who aren't parents of autistic people understand. You may even, as some suggested, have helpful information up here for the caretakers if they need to read it.

As for the problems with getting C's dental problems treated, I don't have anything intelligent to say besides "Man, that really sucks." And, of course, good luck!

*hugs*

Maggie May said...

I also think that your blog should be read by C's carers.
You are an amazing Mum who fights and fights. Good luck with this latest thing.
I was horrified to read about how difficult it is to get his teeth sorted.
I would have thought a bit of common sense was needed here by anyone trying to treat or care for C.
everyone is frightened of being sued for mistaken assault

Nuts in May

Deb said...

Katie is in the process of having a capacity assessment done so that I can become her guardian when she turns eighteen.

Katie has to have a general anesthetic to have any dental work done as she won't let people in her mouth. She's had three so far, without problem, except vomiting after she woke up. I never thought it would be an issue in the future but perhaps it will be. I guess we'll see.

Hope it goes well.

buffalodick said...

You always give a perspective I would not have thought about...

Bonnie said...

I am so sick of laws, that mean well but in the end harm the individuals they are suppose to protect.

It is vital that you continue to speak, blog, publish. I think this will only hold the professionals who work with your son to a higher level of accountability.

Hang in there you are an inspiration.

Elizabeth Channel said...

I agree with others who encourage you to keep writing and not be concerned with any backlash...you have always been forthright and kind in your writing. The awareness and education you have provided to me personally have been invaluable, and I know I speak for thousands of others.

To answer your question, no caregivers/teachers know that I blog at this point. It's not a conscious decision but some close friends who found out about my blog have indicated that they feel odd talking to me about it. Other friends enjoy the dialogue that it creates. Sometimes there is a level of transparency in writing that does not exist in face-to-face friendship, I suppose.

25BAR said...

oh boy!

Hammie said...

Believe it or not, it's never come up! There is such a huge lack of information media skills in our health and education services that I have never come across anyone who actually knew who Hammie was - or admitted it. And If they do I have deniablity in my psuedonyms. Feck em as my husband says.

As for C's care. Jeebus! why cant the care of an individual come first - and politics/arse covering come second. By all means get the nails, hair etc done at the same time. Bratty had all her bloods and an ECG done during her recent dental surgery which has to be done under G.A.

As for the mean dentist? I wish you could come and meet our Dr Bradley. She is so empathetic to her patients and their parents/carers. She never blamed me for Bratty's poor dental health and really encouraged me to find a way around it. And she seems some of her patients in their car.

My only concern for C would be the hospital environment when he goes in for the op. Will they know to put him first, not make him wait around in the busy/noisy communal areas. And how will they administer the pre-med and gas?

Bratty wont take her Pre-med but the nurses let us go into the pre-med exam room way ahead of the op and play "nigh nigh" to get Bratty into her gown. She put me to bed too and we passed the time in a relaxed way - away from the main waiting room and the fricken play therapist who was doing both our heads in.
Call in ahead and use the honey to take pics of the wards, and talk to the senior ward sister about the best way to keep C calm and comfortable.

Good luck xx

Casdok said...

C has had a GA before for his teeth(under the age of 18, so we didnt have to jump through all these hoops) so will be interesting to see being an adult how different it is.
Will let you know!

M said...

Am sorry you've run into some difficulty in getting C's teeth taken care of. Hope you'll be able to sort it all out. My thoughts will be with you.
As for the blogging thing... as you know, I've been writing mostly about education at my site. I just gave the new team at our new school my blog address. C1's teacher said it was helpful, so I'm glad I did it.
However, I will admit to being more than a little careful when writing my posts though because I'm writing under my own name. It does make me somewhat nervous to tell the people that work with my son that I blog. In your case, it could go either way in term of it being an advantage or disadvantage. It depends on the person and how they perceive the world. Some people get offended easily and take things personally and some do not and appreciate the insights... guess you'll have to carefully weigh the risks and benefits of telling a professional you blog before you do it. Again, best wishes. : )

Jayne said...

I am only coping a tiny fraction of what you're facing with consent with my son, whom I'm able to negotiate with at the moment but I have nfi how long this may last.
I've just recently started blogging about his autism as he's only just given me permission to discuss him in detail, so I have no one to compare your situation to, sorry.

Patty O. said...

Wow, this has to be so difficult that it's so complicated now that he is an adult. Good luck with it all. When is his next dentist appointment?

Crystal Jigsaw said...

There is still no where near enough training and experience within the NHS to provide to a person with a disability or special needs. This is plain to see.

CJ xx

Paulene Angela said...

Cannot believe that this is the first challenging patient that the dentist has had to deal with!

And dealing he is not, what crap, he is making life difficult for the two of you. Already you have had to wait 6 months to get this appointment. Gum disease is serious. C just needs a little sedative 2 hours before the appointment to completely relax so the dentist can just look at what is really going on. Casdok you need some team support. Scream or shout girl, the NHS are being ridiculous and making excuses. All this delaying is putting C at high risk.

Wish I was there to support you more.

You have always been diplomatic and correct with you blog. You do not need to explain anything to anyone Casdok.

okasaneko said...

Alphonse has his dental procedures done under general anesthesia and though it is more expensive and requires a longer stay in the hospital (half a day at least post-anesthesia), it does spare him the anxiety and sensory issues that come with dental visits.

He's still a minor now so I don't know how things will work out when he reaches the age of majority. I'm glad though that you brought this up; it's another one of those things I will have to look up on here in my country.

I think you should be very proud of your blog. Yours is always a voice of reason and moderation and it is a voice we need sorely in these times of strife. Wish you all the best always. We continue to pray for you and C.

Kelley @ magnetoboldtoo said...

Every time I come here you hit me with something I haven't thought of...

With Boo it is toenails. He bites his fingernails. Never thought I would be happy about that.

I don't think you have anything to worry about, your blog is honest and informative. It shows another facet of you and they will see what we see - an amazing woman who adores her child.

Petunia said...

Gosh Cas I really hope you manage to get this sorted soon for C. I have gum disease myself and get the roots "cleaned" every three months and I have to get a local anaesthetic and take valium as its so painful. Its incredible that they lose sight of logic when they try to cover their asses with their faces! To "leave it til it gets worse" is not the answer. The more the gums recede from the root, the more sensitive the teeth themselves become. Good luck in getting the legal concents you need asap xx

Joeymom said...

Our therapists and school folks know I blog. I've even provided them the address. It gives them some insight into how we see Joey at home, what attitudes prevail here, and things that he does (and doesn't) do at home. Some of them read. Some of the them don't.

Nic said...

Your blog is one of the most well-written that I follow, so I cant imagine there would be any issues from C's carers. All that comes across is that he is loved dearly, and you have a huge insight into his way of thinking, which they should only find helpful.

Good luck with the GA, for both the teeth and nails!

MMC said...

Fascinating (and perplexing) subject ... well, fascinating if it ain't your kid involved, that is!

Over here (in Canada - but also in the US) it is referred to as guardianship. But here's the thing - you're rightly frustrated at the slow cumbersome (non)workings of a system that can't just see what needs to be done and do it.

Yet many people have a HUGE issue with the system (or anyone else for that matter) intruding/interfering (pick your word du jour) to impose treatment (or anything else) on another person. And were the situation somehow reversed (someone somewhere thought they could just make decisions on C's behalf in what they considered to be his best interests), my gut tells me you too would have a big problem with it. Don't get me wrong - I wouldn't be disagreeing with you, either. Because I think that in the majority of the cases the parents are the ones in the best position to be making these decisions and we need a streamlined process put in place, much like how you became C's appointee at the DWP.

But the talk now is all about supported decision making - which to me sounds fine in theory but far from workable in fact for many people - individuals like C being a prime example. If anyone can come up with a real world workable way to preserve a person's dignity (I loved your link to the checklist of neurotypical privilege BTW) while recoginizing the REALITY of many people's lives ...

I most definitely don't have the answers but it is a subject I've blogged a fair bit on at the Special Needs blawg. And it strikes me that the disability community (at least over here) is being a big disingeneous on the subject. Perhaps not intentionally but ...

We know what we want and we want it to work right. But systems need rules and are slow and cumbersome things. Speaking of which, just from a quick skim, I think your Mental Capacity Act 2005 looks pretty good - much better than the pathetic piece of legislation we have here, which only removed words like "lunatic" and "idiot" in the last few years. Yeah, can you believe that?

I dunno ... can we really have it both ways? It's a tough subject.

As far as people in C's life finding out you blog ... like the others have said you do a great job here and I wouldn't worry too much about it. I wouldn't bring it up, mind you, but would try to work on being cool with it if (when) someone else does. You certainly have nothing to be ashamed of! Although it is a little weird to meet a stranger who feels that they know you ... :D

MMC said...

Here is a better link to that whole supported decision making versus guardianship debate, if anyone is interested.

Palm Springs Savant said...

I've said this before and I'll say it again. Your story is a real eye-opener. Your blog has enlightened me in so many ways.

jazzygal said...

What a difficult time for you and C. Most people can celebrate turning 18...the magical age when someone automagically becomes an adult! But no real thought given to people in these circumstances. All that's changed here is his age. Jumping through hoops is ridiculous. And the Mental Health Act can be such an ass. This I know through my dealings with my mother's Bi Polar.

It's ridiculous.... fighting with a hospital just to get a mentally ill patient the treatment they need.

The laws that are invented to seemingly protect their liberties ( yes, I know the stories of old are horrific) can do more damage when they need help. There has to be a better way to deal with these situations.

I do hope your situation for C resolves itself very soon. xx Jazzy

Amanda said...

BSS said C is on the bendy side? Then another thing to be careful of is making sure the anesthesiologist doesn't hyperextend either his jaw or his neck. Anesthesiologists love how bendy my neck is. But I always tell them not to bend it further than a standard neck because I was ending up with pain and limitation of movement that got worse every time I went under, until I told them to quit doing that. They also mangled my jaw pretty well for the same reason, my mouth is small and my jaw bends far. But it's both hypermobile and has a bone deformity that combine to make it awful, especially the time they put me under for six hours of dental work and basically popped my jaw out thinking I wouldn't notice the pain later. Too often medical people see hypermobile bodies as really useful in mechanical ways and forget there's a person living in there.

Casdok said...

Thats interesting to know - thank you for that.

Visite www.arteautismo.com said...

Olá Casdok
Seu blog é muito bom e até ajuda a mim no Brasil.
Ele não faz mal a nínguém. Não sinta medo pois seu blog só faz o bem!
Um beijo grande em C. Outro grande para voce. Continua firme!
Ray

Casdok said...

Translation - Your blog is great and even helps me in Brazil. He never hurt anyone. Do not be afraid just because your blog does good! A big kiss in C. Another great for you. Remains steadfast! Ray
Thank you Ray :)

Accidental Expert said...

Wow! We're not there yet, but this is definitely something to think about as my guy gets older. What a nightmare trying to navigate the system.

As for your blog...I'm all for full disclosure. Its better that it comes from you than they hear it from someone else.

Mama Deb said...

Sigh...this has got to be a tough one for you. Right now M is in a phase where he refuses to let us near his mouth and nails too. We'd never had too much of a struggle before and it is frustrating for all.
I've wondered about the anesthetic for teeth cleaning thing and think we may have to go down that path in an effort to stave off future gum disease.
I will say that your post makes me question whether there is something going on in M's mouth that has caused his increased agitation and aggression lately...another thing to look into!! Thanks, Casdok :)

Clairelouise82 said...

Hi Casdok.

Sounds like a real pain! I hate it when people who are meant to care and make an effect act of rudely. We are lucky G has a lovely denists who really understands him I hope she is still that once his 18.

I am having many problems with little mans school. I was always fighting for his education and always blog about stuff that happens within school. I got little mans education record under the freedom of education act after requesting it a million times. In it was page print outs of the blog with so much stuff highlighted. Their was even a letter asking someone from the LEA legal advise about how to get the blog remved. My god if their spent as much time on little man as they did me he would be in oxford by now.x

kathleen said...

Hi-took me a while to respond to this..sorry! I wasn't aware-but it seems that some of the teachers at my kids school know that I blog. My kids also know that I write about them..and what I say. I try and stick to the humerous-because well..our life is funny..I do however, try and write about not so nice things in a humerous way as well. The teachers/caretakers that I have had issue with aren't the ones who read me though..But the people who do know my kids and read are given more insight as to who they are..Darn-I hope this made sense..writing with kids crawling on me..:)

Dorothy Rimson said...

Good one

motherx said...

I personally do not tell my boys school about blog. Mainly because if I want to moan about them I'd rather they did not know it was me:)
I really hope they agree to cut Cs nails must be very frustrating for you!! Was great to see you both again:)

autism advice said...

It's ridiculous.... fighting with a hospital just to get a mentally ill patient the treatment they need.

Catatab_Tabimount said...

This can be a real pain. Since when does a specific number determine when a person is fully mature, if ever? Life is not a step equation, where all 7-year-olds need to be in first grade, 8-year-olds second, and all 18-year-olds need to graduate from high school. There are some kids who are grades ahead or behind, perhaps with some lop-sided skills.

There should be a limit to how much decision making can be made. Legal guardianship should only cover essential things like health and safety. In C's case, you are very reasonable and all you want to do is protect him.

I think a lot of parents in America take advantage of their kid's disorder so they can continue to dictate how they should live their lives after they are adults, especially those with Asperger's syndrome. I do not think any parents should do that anyway, but you'll always find those crazy people who make their kids read the Bible and go to church, then telling them who they should date. Of course a family is not a democracy, but it is not a dictatorship either. Parents should have authority to make sure their kids are safe, healthy, and functional, but not necessarily agreeable.

2012 said...

come on~cheer up :)

Anonymous said...

This is my first visit here, but I will be back soon, because I really like the way you are writing, it is so simple and honest

Zed said...

"So if they know this - why so evasive? Maybe the look of horror on the dentists face when she saw C head banging explains it?!"

Isn't it about time that they had specially trained dentists? And I don't mean a day course!

About blogging...
I do worry about it a little but mostly because I worry about L's right to privacy. I think for me, it will prove to be a difficult balancing act between my need to talk or pass on information and my desire to keep L's dignity intact. I know that wasn't really answering the question you asked in your post but it is my largest concern about blogging about L.

Julie Fletcher said...

My daughter's school system knows I write freelance. It is one thing that caused them to get off their behinds and give her what she needed.

I'd comment more, but there's a wiggly toddler on my lap!