A trip to the doctor

Last Monday, I took Duncan to see a paediatrician for a review. It's been a year since he last saw a doctor so we went along. He was in great form and so charming. He chatted on her phone (Hello! Is it Lala! Is it Duncan...yes, I here...) The paediatrician's phone actually rang while we were talking and he answered it, she let him talk for a bit then took over.

Anyway, I told her all about how he's been getting on, what great progress he's made. I mentioned the drawn out bedtimes and the difficulty he has getting off to sleep most nights. She told me that he could try melatonin, so I'm gong to read a bit more about it to see if I think it would be the right thing, and moreover, to see what Gordon thinks about it. He's the medication expert in this family, after all.

She also said that she sees children with ADD and ADHD often and that these are sometimes comorbid with autism. She mentioned drug therapy; stimulants, and asked if I wanted to investigate that possibility. I don't. I told her that although he may fit the criteria for another label, I don't see how it would help him at this stage. I certainly don't want to give him any stimulant medication. He doesn't need it. As long as he's learning and developing, he's fine as he is.

NAS Position on Ashley X

I've just read the the following on the NAS website;

The National Autistic Society champions the rights of people with autism and is committed to equal rights for all disabled people. Disabled children are children first and foremost and, as such, should have the full and equal human rights that are accorded to other children. Preventing disabled children from developing into adults is not only degrading but contravenes their basic human rights.

I am pleased to see that they are taking this position. On the same page, they highlight the campaign by Scope (the Cerebral Palsy organisation) to defend disabled children's human rights.

Scope have this to say about the Ashley X mistreatment;

If we are to prevent potential abuse of the human rights of disabled children in the future then the government must face up to the pressure families are under and increase the money and support available to them. Our society must adapt to the needs of all children, disabled and non-disabled alike. Children must not be adapted to fit our society.

We demand that the government provides appropriate and adequate support to disabled people and their families and prohibits similar medical interventions in the UK.

They are requesting that people sign up to support their campaign. I have added my name, and am so relieved to see such a campaign in place. I can only hope that they get lots more support.

Imprisoned Innocent

I heard on the local radio news a few days ago, about Muckamore Abbey Hospital. People with severe learning disabilities are being kept in the hospital, in wards which are locked at night, because more suitable accommodation has not been arranged for them. According to a BBC report;

One man was ready to leave the hospital 10 years ago. He is still there. He is one of 118 people whose treatment is complete - but his discharge has been delayed because there's nowhere suitable for him to go. For over 10 years, there has been a policy that no-one should live long term in hospital. Hospitals like Muckamore should be used to assess and treat people prior to their discharge.

And also;

And there's another problem. Some locked and unlocked wards were recently amalgamated at Muckamore and that has meant about 20 adults now find themselves locked up - even though they have never been assessed as needing secure accommodation.
Now some have expressed concern that these people's human rights are being abused.

Well, too right their human rights are being abused. I don't know what I can do about this, but there has to be something. It cannot be allowed to happen without concerned citizens making some sort of protest.

Turf and Trains

We took another trip to the Folk and Transport Museum yesterday, where we met up with 2 other families. On our way in, I showed my pass, got the tickets, and said 'thank you, cheerio!' to the man in the ticket booth, to hear a clear, high little voice call out from behind me 'thank you, cheerio!' Lady and I were laughing at how cute Duncan sounded and he said 'ha, ha, ha. It's funny!'

It was wet and windy but we're hardy. We started off in the Folk section, and walked...did I just say we walked...no, we don't do walking, we ran round the town and in and out of various old buildings. We saw our friends and I spent about 5 minutes in their company, before Duncan splashed through a puddle getting his socks and trousers wet. He wasn't happy with that, and was about to sit on the wet, muddy ground and strip off. I took him into one of the cottages and we sat in front of a lovely turf (dried sods of peat) fire where he did take off his wet things, and I dried them by the fire. It was really pleasant actually. We sat in the warmth, chatting and I told him some stories (about a little boy falling in a puddle). He enjoyed the rocking chair, we're going to have to get one of those for our house.

I let him go upstairs alone, expecting him to come back straight away. When a minute had passed, I went up to find him lying in one of the grotty, old beds. Eventually we went out to find the others, as I had abandoned Thomas and Lady. They were all happy, but cold, so we went over to the enclosed transport section.

The children all had such a great time and Duncan was pleased to see that Percy was back in place (in the model train display case). Thomas is so funny when he gets together with his buddies, he acts all silly to try to make them laugh. I took the boys home after an hour or so, but Lady stayed with D and her boys (so D was only looking after 7 children aged 12, 11, 9, 8, 7, 4 and 1!)

On Friday, my dad and step-mum came round for lunch. It was his birthday, so we were having a little party. Lady made a nice card, and I made some pizza and a cake. They brought a leftover box of Christmas crackers round and the children enjoyed opening those; particularly Duncan. I had a headache later though, and the 2 boys were being very loud. It just felt like one of those days when I wished children came with an off switch, or at least a pause button. I had a nice cuddle though when I was putting them to bed, and when Gordon came home we ordered a takeaway curry, washed down with a glass of red wine, and the day was fine again.

Something to laugh at every day

Last Sunday, my dad and step-mum came for a visit. Duncan wanted my help with something or other and kept asking me to come with him. A few times I stalled and told him I'd help him soon and he then grabbed my hand, telling me to come on and to wake up. I told him he was hurting my hand (he was squeezing hard and my hands are sore anyway at the moment) so he kissed them both, walked round behind me, and started pushing my back in the direction he wanted. Dad thought that was so funny. Duncan always does that, or when I'm having a meal or a cup of tea and he's waiting for me ('cause I always tell him I'll help him when I've finished eating/drinking) he sits watching each mouthful, encouraging me, sometimes putting the cup to my lips.

On Monday we went to the Transport Museum and met up with M. our NAS befriender. A large room full of steam engines ensured Duncan was a very happy boy. He did get a bit worried as the Thomas and Percy trains were not in their usual position in the model train display case. He kept going back to it and looking for them. I said that they might be at the works. I said perhaps Percy had gone into the water (as in the story, Percy Takes the Plunge) and had to be mended. He didn't agree with this assessment and decided they were stuck deep inside one of the tunnels. He thought hard and searched in his mind for the right words; 'Not at the works, Thomas is...underneath...inside...in there.'
I remember a speech therapist telling me about the difficulty she was having helping him to understand such concepts as under, over, beside etc. Many hours of playing trains together have sorted all that.

At home he impressed me by completely independently taking a piece of paper and some markers and drawing a huge number 6. He copied it from his 'Percy' engine, so it was yellow and red and green in the middle. He then covered it with sticky tape, asked me to cut it out and stuck it down his trousers a bit so it sat against his side. Then he ran chuffing round the house. It was bedtime soon after, and I was able to do my Fat Controller impression and instruct all the engines that at the end of their busy day, they all had to go to the shed for a well deserved rest. Somehow, the little engines responded to this, and I had one of the easiest bedtime sessions for weeks.

Our slightly more structured schedule is working well for Lady. She's working well and getting through a lot. Thomas still just writes little notes when he wants, draws rainbows, plays computer games and with his toys. Well, they'd be able to play with a few more toys if I could find the key to our spare room. Most of the toys are stored there and locked up, so they aren't all pulled out at once and it's easier to tidy up. But we can't find the blasted key or any of the spares. If it doesn't turn up soon, I'll have to seek Anthony's intersession.

A year of blogging

I posted my first ever blog post on January 16 2006. and have written 133 posts since then. I really didn't think I would keep this up but it's been wonderful. I'm so pleased that I have recorded some of the little stories of my children growing up; things that I will be grateful to read again for years to come. The interactive aspect of blogging is great too, I feel honoured to be part of 2 great blogging communities; the home-education ring and the Autism Hub.

I'm going to rewrite my 2nd ever post here, which was about why the blog was called The Voyage.

Because when Gordon and I first became friends back in '91, I lent him a Christy Moore tape called 'Voyage' which he listened to while travelling to Jamaica to see his Dad. It's something we shared right back at the beginning of 'us'. I really like the song 'The Voyage'. It's simple and true and as time goes by and we have made a family, it means more.

Life is a journey, and love is its boat,
On troubled waters, it keeps us afloat,
When we started this voyage, there was just me and you,
Now gathered round us we have our own crew.

Isn't that sweet...

Anyway, then the children were 3, 5 and 7 and Duncan was still at school. They are all learning at home now and very happy we are with this set-up. They have all grown so much since I started. Lady is even taller, more knowledgeable, mature and sensitive and into Jujitsu and Harry Potter. Duncan has progressed more than I would have believed possible. He talks more, makes himself understood, is interested in loads of things, is learning to read and just recently started writing and drawing too. Thomas is no longer the just out of babyhood cutie. He's a proper boy, independent and smart (but he's still Mummy's little darling first thing in the morning and last thing at night.)

I think I'll keep this up for a while yet. It's part of my life now. So to anyone who ever reads my wittering, thanks for dropping by and especially thanks for when you've felt like leaving a comment.

And to the person who found me by Googling 'Thomas Tank Engine causing learning difficulties', no, they really don't. They're just a harmless, rather dull to read (though I'm so familiar with the world as it exists on the Island of Sodor now that it feels like a 2nd home) set of books, films and never ending merchandising.

A New Start

I've decided to make our days more structured. I think this will help all of us, and I want to cover more topics with Lady especially. So for the past few days, we have been gathered round the kitchen table, looking like a magazine picture of a home-ed family, withs books spread out and 3 little heads bent and busy. Well, there was a period of about 10 minutes when it looked like that!

I'm asking Lady to do some maths from the CGP book every morning, then an English task (either a story or letter or blog entry). She has never been able to finish this sort of thing and we have loads of half written letters and stories lying around. I'd also like to see her gain confidence at getting things down on paper. She can tell these long convoluted stories when she's playing with the boys, but dries up when faced with a blank page.

It's been fine these past few days. Lady sits beside me while she's working at her maths, Thomas mostly plays PC games, but he's been colouring in, drawing mazes and rainbows and writing with the stencil. Duncan decided that he wanted to write some numbers too, and wrote in an old maths workbook. Apart from that, we made our pictures and books and he was quite content.

We're going to start using the BBC schools radio programmes again, starting today. We'll be listening to a music programme and a drama one.

Lady has also started back at her Jujitsu and Brownies and I had another Salsa class last night. I've moved up into the intermediate class, and I spent much of it feeling out of my depth and just going wrong over and over. But right at the end, I stopped thinking too hard about the moves, and just allowed myself to be led (there are plenty of men in the intermediate class, whereas in the beginners it was almost all women) and I was getting it! It felt great. I'm glad I started this and look forward to it every week.

But right now, I'm cooking some chips for Duncan. He's already asked me to make a little paper bag, decorated to look like it came from that McD place, to put them in.

But I'm not weird!

Deb tagged me with the weird thing meme that's been doing the rounds. I've been (over?) thinking about this; is weird the same as unusual? Is doing something that isn't common in your location and culture, weird?

Well anyway, the best I could come up with is this;

1. My right pupil is always a bit smaller than my left.
2. When I met Gordon (in university halls of residence) we were friends for a few months, before he wanted to know if we could, well, be more than friends. His method of finding this out, was to generate a multiple choice questionnaire, all nicely printed out, and push it under my door. While it might seem that that's more of a weird thing about him, I thought it was great. We also used to write equations and draw graphs in our letters to each other when we lived apart. I mean, is it any wonder we've produced a neurodiverse child.
3. I sucked my thumb until I had children of my own; then I finally decided I'd better quit. Lady started sucking her thumb the day she was born and still does. I'm not in the least bothered by this.
4. I've never smoked and never tasted so much as a sip of any alcoholic drink until I was almost 30. (The fact that Duncan was born the year before really isn't related to this!)
5. I had good reason to believe that I would need a little pharmacological kick to ovulate, when I wanted to start a family, so I was on a waiting list for a year to see a fertility specialist. During the appointment, the doctor asked me for a urine sample, which he took into a little back room where I could hear him rattling about for a while. After about 5 minutes he came out to announce that I was already pregnant. Probably the easiest job he'd ever had.

This went round the Autism Hub a while ago, but then it was only 5 weird things people were listing, and not 6, so I'm going to leave it at that.
I could go on, but some things are just private ;-)

If anyone wants to enlighten us with what is weird and wonderful about them, and has not been tagged already, then go right ahead.

A bit more on the 'Ashley X treatment'

I don't usually write about anything other than my family and our experiences. I was just so shocked about this case, the coverage it was getting, and most of all, the huge bias in blogs and media commentary in favour of the 'treatment', and even worse, how many people were actually expressing views that she 'would be better off dead'. I'm inexperienced at writing about disability advocacy and especially at writing about feminism; but this whole thing just seemed to me to be so clearly an affront on the rights of women, children and people with disabilities.

Many people seem to be saying that we have no right to judge the parents, we don't know the exact particulars of the case, we don't know what it's like having to care for a child like Ashley. I agree with the last 2 points, but I think that it is important to judge this case, and I suppose by disagreeing with it, then I will be, by default, casting judgement on the people behind it. I would blame the doctors and ethicists involved and not the parents, who should, I feel, have been strongly advised against this. And although we don't know all the details, we can discuss what we do know, from the paper published last autumn by the doctors who performed the 'treatment' and from the long blog post written by her father.

Others have defended this by pointing to the '3-month age' functioning of the child as if this means she loses all her human rights. Her father addresses this too saying;

"If people have concerns about Ashley’s dignity, she will retain more dignity in a body that is healthier, more of a comfort to her, and more suited to her state of development as George Dvorsky, a member of the Board of Directors for the Institute for Ethics and Emerging Technologies, alludes to in a related article: “If the concern has something to do with the girl’s dignity being violated, then I have to protest by arguing that the girl lacks the cognitive capacity to experience any sense of indignity. Nor do I believe this is somehow demeaning or undignified to humanity in general; the treatments will endow her with a body that more closely matches her cognitive state – both in terms of her physical size and bodily functioning. The estrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby.”"

This is the ethics advice they have received. Oh dear.

It was interesting to read the comments on my own post. I was entirely unsurprised to see that all the Autism Hub writers who commented, were also very concerned about this and thought it was completely wrong. The main voice of dissent (here anyway) ended up sounding very extreme and irrational.

I want to point anyone interested in the direction of some of the great blog posts I've read over the past few days. First, there's Thirza's post, Growing Up with Sky, where she writes lovingly about her disabled sister and gets pissed off about the 'Ashley treatment'. She addresses in particular, the concept of mental age and how this applies to her sister's life.

Wheelchair Dancer has written again about this, and quoted the UN Convention on the Rights of Persons with Disabilities, including;

Article 17 - Protecting the integrity of the person

Every person with disabilities has a right to respect for his or her physical and mental integrity on an equal basis with others.

I think that says it all.

The Implicit Learning of an Autistic Boy

Now I've got that (previous post) off my chest, I can get back to normal.

I'm still drawing loads of tiny, detailed pictures as requested by Duncan. He did however, ask me to stick 2 A4 pages together to draw a really big rocket, which he told me to roll up round a cardboard tube. I then had to tape the rocket to the back of his shirt, and he pretended to blast off and whiz around. I knew then that he'd had the final product in his mind all along, he just fed me little bits of information as needed.

I had been wondering for a while how to persuade Duncan to draw for himself. He has always become upset when I've tried before, he wanted the finished products to look exactly like what's in his mind, and he reckons I'm more likely to achieve that than he is. But I just had this great idea; I could encourage him to draw, whilst I'm making whatever it is he wants. It worked right away. As I was drawing a picture of some 'fire bursts' (like those emanating from Buzz Lightyear's laser weapon), he drew a few pictures of our faces, then he drew round his hands and feet, then he copied some writing, then he spontaneously drew his own laser fire-bursts which he was so happy with, that I was asked to seal it with sticky tape, cut it out, and stick it onto his sleeve. His writing is so precise. I was amazed, I mean, he hasn't picked up a pen to do anything since he left school.

On Sunday I overheard him running water in the kitchen sink and muttering to himself that he would 'clean it'. I went in and watched him rinse a cloth and use it to wipe our (newly painted) wall, where he'd written, most beautifully, 'Big Antz.' (He's been watching a trailer for the film Antz quite a lot recently.) I had to turn away to hide the huge, proud smile on my face, and get the disapproving look in place.

Well, we had a discussion and he's said he will not write on walls, just on paper. We'll see. I'll have to buy water soluble marker pens again, I think.

He absorbs information from many sources, but the main way right now, is the PC. He likes to watch Youtube films; recently he's enjoyed films people have uploaded of their pets, especially their dogs. He plays lots of CD Roms and uses children's websites. He was listening to a story on Cbeebies yesterday; Don't Wake the Baby. He thinks this is hilarious and always follows the words with his finger as they are read. He did a quick Google Image search just after, typing in the word baby. He can type loads of words; Toy Story (and all the character names), 101 Dalmatians (he copied it from a book the 1st few times, but it's off by heart now), Pinocchio, (ditto), Ace Monkey, Adiboo, Magic Roundabout, and of course, all the Thomas the Tank Engine names.

We have so many little games we play together. He instigates most of them and tells me what character I'm playing. Quite often I'm Auntie Mable and he's Pippin the dog, or I'm the evil emperor Zurg and he's Buzz Lightyear. (Him - You killed my father. Me - No Buzz, I am your father. Him (pretending to fall down the stairs) - Aaaaaagh!

We still make lots of little home-made books; he, dictating the story and I, illustrating it according to his instructions, He then learns how to read them.

On Saturday, we walked to the postbox together. He put my letter in his little backpack and we went off, hand-in-hand along the road. We chatted as we went, and an old man greeted us, saying 'hello'. I said hello back, and Duncan instantly helloed him too!

He is progressing so well, and in a way that works fantastically for all of us. I was wondering whether Lady and Thomas should go back into school, so I could have more time to focus on Duncan. He is calmer and much easier to look after when it's just the 2 of us. Gordon often suggests that we might all benefit if Duncan was home-educated alone.

A friend of Lady's came over to play with her on Friday. When her mum was picking her up, she was talking about how much homework her children get, especially her 10 year old son. (He's doing the 11+ next year, that most unfair judge of children's abilities and future expectations, that is still so much in favour in Northern Ireland.) That isn't what I want for them. I don't see the point in a system that has the children in school for almost all of the day, then sets homework to eat into what little time the family has together. I'd reckon that many children who do well at school, do so because their parents put so much time and effort into helping with the homework.

Anyway, I just believe that to continue as we are is best for everyone. I'm happy that all 3 children are growing up together every day. They are such good friends, and I don't want to separate Duncan from his siblings. It's good for him having them around and vice versa. Today, they were having a great time playing 'Toy Story'. Duncan was just one of the gang. I also still think that the children will all get a better education at home.

The mistreatment of Ashley X

My head is spinning. I've just been reading about 'Ashley X', a disabled 9 year old girl from the USA. Ashley has static encephalopathy, and she cannot walk, talk, keep her head up in bed or swallow food. Her parents have taken some extreme measures which they say will enable them to care for her better. From the Guardian article;

In discussions with doctors at Seattle Children's hospital they devised the treatment: removal of Ashley's uterus to prevent fertility, excision of early buds on her chest so that she would not develop breasts, and medication with high doses of oestrogen to limit her growth by prematurely fusing the growth plates of her bones.

The parents insist that the treatment, carried out in 2004, was conceived for Ashley's benefit and not their own ease or convenience. With a lighter body and no breasts, Ashley will have fewer bed sores and lie more comfortably. And a smaller Ashley can be cared for and carried. "As a result we will continue to delight in holding her in our arms and Ashley will be moved and taken on trips more frequently instead of lying in her bed staring at TV or the ceiling all day long," they write.

Most of the comments I've read on the BBC site are backing the parent's decision. Lots of people are saying that unless 'you have walked a mile in their shoes', you cannot criticise their decision. I'm wondering if anyone is willing to put themselves in Ashley's shoes?

On the Guardian blog, there are all there are several clever-sounding and highly disablist comments like the following;

Human rights are concerned with the individual, preventing harm to the individual, preventing violation of their wishes and preventing the removal of their freedoms of choice. The child in this case has no wishes to violate, and the action taken will not limit her freedoms of choice for the same reason. The child's psyche will not experience the moral indignation we might jump to, but she will certainly be able to feel pain. If the bedsores explanation is medically correct, the right for the child to remain in comfort and free of bedsores is justification enough.

I have left a comment of my own on the BBC site but can't be bothered to engage with the 'superior' beings who write on Comment is Free.

I managed to see an interview on the BBC News 24 channel with a woman from a UK disability organisation (I didn't catch which one) and a doctor from the Great Ormond Street Hospital in London. They both spoke against what has been done to this child, the woman gave a brilliant interview making all the points about how Ashley's human rights had been disregarded, how technology is available to enable many people to move and communicate.

I think this is horrible and I have tremendous pity for this little (and staying that way) girl. I dislke the name they've given her; 'Pillow Angel'. I wonder if there is any evidence showing that women get more bed sores than men? I say that she has been mutilated in a way that should shock anyone who cares about human rights, particularly the rights of disabled people and women. If the parents are concerned that she could be impregnated, contraceptive pills exist. There are even Pills that prevent menstruation, though I personally don't see why dealing with bleeding once a month would be such an issue. They say that;

Unlike what most people thought, the decision to pursue the “Ashley Treatment” was not a difficult one. Ashley will be a lot more physically comfortable free of menstrual cramps, free of the discomfort associated with large and fully-developed breasts, and with a smaller, lighter body that is better suited to constant lying down and is easier to be moved around.

She is only 9 years old. Who can say what her outcome would have been?

I would agree that the parents, and all those caring for children who need so much help and attention, deserve to have all the support and access to enabling technology they need and that really doesn't happen now, either here or in America. But this is just wrong. And yes, I am entitled to judge.

For a good analysis of the issues, read Wheelchair Dancer. For a gut reaction, go to Cheaper Than Therapy.

Christmas Meme

Hazel tagged me.

Name three things:

* that you had hanging on your tree:

• Cheap, cheerful, indestructible Christmas tat that we've collected over the years
• home-made decorations
• a photo Duncan looking cute in a Santa hat, tied with a bit of ribbon.

* that you’ve eaten / drunk lots of:

• Christmas cake and cups of tea
• Turkey; it was delicious for Christmas dinner, filled a few sandwiches and a pie and provided a base for a great stock.
• Port; goes well with the cake too.

* that you said most often this Christmas

• Happy Christmas!
• This is delicious!
• Pick that stuff up.

* that you heard most often this Christmas

• Hooray! Thank you!
• Play Harry Potter with me (new CD Rom).
• Draw Brum/Adiboo/a frog/a rocket/Toy Story Zurg...(from Duncan).

* that you’ll do again next year

• Get together with all my family and their children for a party. That was ace.
• Facilitate the magic of Santa.
• Make a big Christmas cake (next year, with whiskey!).

* that you’ll *never* do again

• Can't think of anything...non, je ne regrette rien.

* that you didn’t do this year but hope to do next year

• Relax more and tidy less.
• See more friends.

* favourite presents this year

• The joy of our children on Christmas morning, and having them play together so happily.
• A DVD of Sideways and CD by Justin Timberlake.
• My classy red handbag; thanks L. for your impeccable good taste!

* that you’re glad you didn’t get for Christmas

• Too much stuff.

I'm not tagging anyone specifically, go ahead anyone who fancies it.