29 Sep 2006

Extraction

The bad tooth came out today. We were nervous about how it would go, but tried to prepare Duncan as much as possible. I'd made a little book about it, showing how we'd end with a trip to the toy shop, so he knew there would be something to look forward to. We'd practised putting an imaginary mask on our faces, and we had taken a hospital identity bracelet home to play with.

Gordon dropped me and Duncan off at the children's hospital, then left Lady and Thomas with my dad and step mum. As soon as we arrived in the waiting room, we were shown to the ward, where a bed was prepared for Duncan. There was a portable DVD player, with a Thomas film already going, and a selection of Thomas books and toys. Gordon had briefly mentioned to the nurse on Monday, how Duncan likes trains. The other families all remained in the waiting room. Duncan was happy and relaxed, holding his new Brio Percy toy train (which I'd ordered from Ebay, and had thankfully arrived the previous day). The anaesthetist talked to me about the option of administering a mild sedative, and we decided to opt for this. So just 5 minutes before he was due to go into theatre, the nurse gave me a spoonful of Nurofen, with a small quantity of ketamine, and Duncan took it without too much trouble. Then he was wheeled in on the bed to theatre. I held him on my lap while the anaesthetist gave him the nitrous oxide. That was difficult. He struggled when the gas started to flow, but I'd been warned just in time and was able to hold him for the few seconds it took to take effect. He drifted off so quickly, was put on the trolley and we went out to wait. I was tearful at that stage, seeing him struggle, then so helpless was distressing. About a minute later, the dentist who wasn't operating came out to say he'd had just one tooth extracted (already!) and after a few more minutes, we went back to the ward where we was already awake. He was disoriented, upset, bleeding slightly in his mouth and thirsty. I cuddled him, he had some juice, and more quickly than I could have imagined he settled again in my arms. He started asking for his Brio Percy. We couldn't find it, though he'd been holding it as he went to theatre, and the nurse remembered putting it on the trolley. Everyone started looking all over for it; they all recognised how important it was to Duncan. But we just couldn't find it and Duncan was most upset. We had to leave, though the nurse promised to have a good look for it again later, and to let the cleaners know to keep an eye out also. She told me that if it didn't turn up, she had one at home that her sons didn't play with much, and she'd send it to us. How nice is that?! But while we were waiting outside for my dad to pick us up, Gordon was called on his mobile; the train had been found, wedged in the trolley wheel! Hurrah!

We made a quick trip to the toy shop to buy a Thomas Aqua Draw, then on to the apartment for some bacon rolls, before Gordon went to work and the rest of us came home.

Duncan was sleepy and quiet. After playing with Lady and Thomas for a while, he started to get a bit cross, so I took him upstairs to lie down with me for an hour in my bed. We had a nice snuggle, and Brio Percy was rolled up and down my shoulder. He just jumped up again, wanting a drink.

Lady and Thomas have been great throughout all these events. They love going to visit their grandparents, in fact, when I woke Lady early today, she said, 'Oh fantastic, this is the best day of my life since I went to Jamaica, or since Duncan and Thomas were born!' She does go in for hyperbole! She also wanted to see the damaged tooth, and reckons the tooth-fairy will throw it on the reject pile.
Thomas was worried about Duncan when I told him what was going on. He said, 'I don't want my brother to be sick.' Wee sweetheart.

As on Monday, my dad and step mum were amazing. There were a few posts on the hub recently about wonderful, understanding and helpful grandparents. I can totally identify with that. My dad and Duncan have a really special bond. He knows exactly how to engage him and as soon as they got together, they start playing. Dad revels in Duncan's achievements, and tells everyone about all the funny and clever little things he does and says, just as he does for his other 7 grandchildren. That love is returned as all the children adore him too.

26 Sep 2006

More on dentists

We managed to get a pediatrician to examine Duncan today at the children's hospital dental department. It was awful and wonderful. Duncan was highly stressed and didn't want to go into any of the rooms. He just kept shouting out, saying he wanted a 'Brio Percy' (his latest train request) and I was desperately and uselessly trying to distract and entertain him. We were asked into the examination room very shortly after arriving, and I had to prise is fingers from the doorway, so adamant was he that he wasn't going in. He was literally terrified. I held him on my knee and the doctor was able to stick the little mirror into his open mouth and in less than 30 seconds had seen enough to know what treatment was needed. By this stage I was actually in tears, so I took Duncan into the corridor while Gordon had a quick word with the doctor. I was feeling a bit embarrassed (with myself) and very, very sorry for my poor boy. He was crying, telling me he was so sad, shouting out that he was finished. I started spelling out train names on an alphabet poster on the wall as I sat on the floor holding him. He noticed what I was doing and helped me finish a few words and was then over the outburst.

Now I said earlier that it was also wonderful. What I mean is, the staff were amazing. They were so understanding. It turns out that Duncan's molar is dodgy, it developed incorrectly, but it isn't decayed and the rest of his teeth are in excellent condition. He does need an extraction though, and he has been fitted into their Friday list which is excellent. The doctor assured us that Duncan would be seen first (as usually there can be a 1 or 2 hour wait) and to cut back on the hassle on the day, Gordon was able to fill in most of the nursing paperwork today (after Duncan had calmed down and was happily eating nuts and watching TV in the waiting room) and he will not be put through a further examination, which usually takes place before the procedure. We need to arrive at 8am, he should be seen at around 9 and we were told we'd be leaving at 9.15. I felt close to tears again when I saw how much they were willing to do to cause as little trauma to Duncan as possible. Gordon was moved by their caring attitude too. Duncan wasn't impressed though; when the consultant came to talk to us in the waiting room, Duncan put his hands over his ears and very directly told him to go away.

While we were at the hospital, Lady and Thomas were being looked after by my dad and step mum, who live close to the hospital. The children all love going there to visit and having an appreciative audience to show off to. Thomas took a few dressing up clothes and his trusty snakes and ladders board. My dad is so helpful. He dropped us off at the hospital and picked us up again to save us needing to find a parking space, then (after we'd all eaten some of their delicious home-made vegetable soup) he drove Gordon back to his hospital as he had to go back to work.

It's all rather stressful and I'm dreading Friday, because no matter what, it is going to be hard on him. But we'll get through it together. He's a tough boy. He's my darling angel, who right now, is lying beside me on my bed, having just fallen asleep with his arm around me as I've been typing.

25 Sep 2006

Duncan's dental situation; Part 2

Thanks everyone for sharing your advice and experiences in reply to my last post about Duncan's teeth. It's one of his baby teeth that's been affected and we've been told that for first teeth, only extractions are performed under GA. We are hoping to get him dealt with in the next few days. He will definitely need a GA, it would be much too frightening for him to have the procedure under local anaesthetic. Thankfully, all our medical needs are met by the NHS, so I don't need to worry about insurance, and the local children's department is excellent.

Poor Duncan has been very unwell over the past 3 days, with a slight fever, pain in the tooth and swelling in his jaw. I tried to give him some ibuprofen with limited success at first. He hates taking medicine, so I had to hide it in his drink and get the medicine:juice ratio just right. For 2 nights he cried and whimpered in pain almost all night, and I had to lie right beside him. He was so confused by the whole experience that he didn't know where to put himself and flitted from one bed to another, desperately trying to get comfortable. Last night, I managed to give him a bigger dose of pain killer before bed and he slept right through. I'm glad to see that the swelling has reduced a bit too.

As usual when he's ill, he is very cuddly, and lies beside me or on my lap and gets upset when I leave his side. Yesterday he was feeling well enough to play with his trains and watch Thomas films on YouTube. Gordon spent the morning fixing Lady's computer which I had messed up completely by deleting a system file, then trying to fix it using a Windows disk I found lying around and then I ...well, I just cocked the whole thing up and he had quite a job sorting it all out from scratch. Afterwards, Lady spent ages playing with a French CDROM. Perhaps she's trying to learn a some French for when we meet up with our HE friends and their long-term guest. Thomas and Lady spent ages on the trampoline yesterday too. They are both very good on it. Thomas can do all sorts of fancy manoeuvres. I must see if I can get him into a gymnastics class or something, if he's old enough. I think he'd enjoy that.

While the children were all occupied yesterday afternoon, I started teaching Gordon some of the Salsa moves I'd learnt at my class. He was doing great at the end and the magical music by the Afro-Cuban All Stars helped. His Jamaican and Cuban roots were certainly in evidence!

It did me the world of good too, since I'd been feeling bad about Duncan and my liability in what happening to him. I also have been reading too much stuff about autism in the media, and that's always guaranteed to wind me up since there's so much balderdash printed. Though I read a lovely article today which counters the prevailing attitude; Understanding Autism by Kevin Leitch. I hope lots of people see it and reconsider what ideas they might have formed about autism.

22 Sep 2006

Duncan's Dental Crisis

I noticed that Duncan was poking in his mouth a lot over the past few days, chewing his clothes and mouthing toys. When I looked at his teeth this morning, I thought the tooth was cracked. I called the community dentist and managed to get an emergency appointment. She was very accommodating, and Duncan was frightened at first, but we managed, with him sitting on my lap, to allow the dentist to have a good look round his mouth. It turns out that one of his molars is decayed.

He will need either a filling or to have the molar removed. I think it would be less invasive if he had a filling. However, there is no way he could have the procedure under local anaesthetic, so he will need a general anaesthetic, or to be sedated.

I'm worried about the risks here.
I'd like to know, if anyone has any advice they could share on similar experiences they or their children have had.

There's always something.

21 Sep 2006

Our friends come to stay

We've had friends over to stay for the past few days and it has been marvellous.

I'm just going to name them (for blog purposes) Belle and Sid, and their children, Edward and Emily. Their real names are, as always, much nicer!

Belle and I were at UCL together, we met on the first day of classes and have been friends ever since. (I was going to write 'studied together', but since we did as little of that as possible, I thought it would be dishonest!) She is smart, funny, passionate and compassionate, and happens to be beautiful too. She was my second bridesmaid 10 years ago, then she married a wonderful man 5 years ago. They now have 2 gorgeous children aged 3 (almost 4) and 1 (almost 2). We now live on either side of the Irish Sea, so we were delighted when they announced they would be coming to visit us.

They arrived on Sunday afternoon, and straight away the children went off together to play. Thankfully, Edward loves trains as much as my children, so he was perfectly happy. Little Emily stayed safe in her Daddy's arms for a while, and when she was ready, she went off with Lady to play in the garden. She liked the guinea pigs, especially Daisy, and busied herself feeding them grass. The children all bundled along together for the 3 days they were here, sometimes building tracks, sometimes watching TV, sometimes playing outside. Lady and Edward invented a game in which they were secret agents protecting a precious ruby. Belle was amazed at how seldom she even saw her son; he was too busy doing his own thing with his friends.

We went on outings to the transport museum and W5, 2 places our family visits often. Our guests were very impressed and everyone really enjoyed themselves. Gordon joined us on our trip to W5, and we all ate at the pizza restaurant. That occasion was the 1st time our whole family has ever sat down to eat together in a restaurant, and it was a most successful meal.

Each night, when the children had all gone to bed, we adults sat and enjoyed a lovely meal courtesy of Gordon's great cooking skills. I usually provided desert and bread. We so enjoyed our time together. They left for the airport yesterday afternoon, and we were sad to see them go. It was a special time. Belle is one of the 3 people I miss the most since moving back to Ireland.

Duncan was perfectly happy dealing with extra people in the house. He just carried on as usual and enjoyed having a few more adults to tickle and cuddle him.

15 Sep 2006

No indeed

We had another day out at W5 yesterday, meeting with a few other HE families. As ever when we're there, we spent most of our time in the section with the huge wooden train set, the balls and water splashy area, and the house construction play area (complete with a crane and foam bricks). Lady and her friend J went off together around rest of the centre.

Duncan tried to grab the controls for the crane from another little boy, about 2 years old, who was not happy about this interruption and bit Duncan hard on his arm. His mother was affronted and apologised as I comforted Duncan, who was upset but not crying.

We all headed to the pizza restaurant for a noisy lunch. Lady ate loads, I can't believe the appetite that girl has sometimes. But she is always on the move too, so is lean and strong. Duncan ate some ice-cream, scooping it up with some toy chattering teeth Lady had just bought him. He was all excited about the purchase of 'false teeth'; he's had a thing about false teeth for a while now.

When Gordon came home, I asked Duncan to tell him what the 'naughty boy' had done in W5. Duncan said, 'naughty boy, bite' then demonstrated on his own arm. He showed Gordon where the injury was (there's a small bruise). We were happy that he was able to tell a story about some previous event, as he hasn't done that before.

There have been new additions to Duncan's repertoire of language. It might seem that I'm perseverating on this topic, but I find it helpful to record it here.
On Wednesday, in reply to something I asked (don't remember what) he responded with 'No indeed'!

When Gordon asked him last night as he was going to bed 'do you love me?' he replied, after thinking for a few seconds, 'yes I love you.' Gordon said, 'do I love you', some more thought, then the answer, 'yes, you love me.' That was the 1st time ever he used you, me and I correctly in such a sentence. What a star!

The other new phrase, is 'yes, I am' which is used interchangeably with his other mode of assent.

I love seeing this progression; unforced, unhurried - natural.

11 Sep 2006

Yes, I love you!

Duncan is talking a bit more these days. When you ask him if he wants something, he'll answer with either yes or no thanks, followed by the subject of the question. So I might ask if he wants some soup; 'no thanks, soup', or if I ask if will say goodbye to Daddy when he's going to work, he says 'yes, bye-bye Daddy.' He also uses this when he doesn't want to do something, so I might ask him to tidy his trains at night, and he says 'no thanks, trains in box.' It's such a polite way to refuse!

There was an incident yesterday when Gordon, Thomas and Lady returned from the shop. Duncan was crying and stopping them from opening the front door, because he wanted a new toy train, and I think that he knew they wouldn't have it and wanted to put off the certainty of dealing with his disappointment for as long as possible. Anyway, he tantrumed, everyone was cross about all the noise and fuss and for a while I felt so overloaded myself that I started to cry for a few minutes. Duncan was sitting right beside me at that point, and was crying himself, but he immediately noticed what I was doing, he stared into my eyes and started stroking me and kissing me in a most concerned manner saying 'kiss it better' over and over. He said, 'Duncan so sad, Mummy happy.' And he did make me happy again.

Later, the children all had a bath (and played with the new squeezy Thomas bath-toy) before bed. Duncan was tired and wanted to lie in my bed for a while. I tucked him in, and hugged him tight, saying 'I love you', he spontaneously responded with, 'yes, I love you.' Then he said 'Mummy cuddle Duncan.' So I did, but not how he wanted, so he clarified, 'Mummy and Duncan lie down, Mummy's bed' So I lay beside him for a few minutes to hug him properly.

This morning, Thomas had a request with his morning cuddle, 'Mummy, will you buy me a baby sister?' I laughed, then asked him if he knew where babies comes from, and he said that they grow in my broom!

10 Sep 2006

Fine as we are

The house is relatively quiet right now, as Gordon has taken Lady and Thomas out shopping. Duncan is sitting on the floor beside me playing with, well would you believe it, he's got the trains out!

We haven't done anything remarkable since Friday, when I took the children to a big playground not far from here, and we met up with a few other families whose children learn out of school. It was a lovely sunny day and they all had a great time. I was required to play several games of 'chase-kiss' with Duncan, so I had my work-out too!

A few times, I felt it was necessary to explain Duncan's actions or limited verbal understanding to other adults there. He wasn't doing anything wrong at these times, as he was actually on great form. I wondered if I should get him something visible (like a T-shirt with a message or a badge) that would explain in a non-condescending or pitiful way, that he won't understand them if they start jabbering away to him; especially for those times when I'm not right there. I don't mind telling people he is autistic. (Though I have problems with saying it when his behaviour is poor, as then it would just reinforce people's negative perceptions. For example, when he has a tantrum in public, I rarely make eye contact with people around us; I just shut them out and concentrate on Duncan and his needs.) Anyway, I don't know if it would be a good idea or not.

Thomas would have started school this term had he been going. Compulsory education here (not schooling mind) starts the autumn after the child turns 4. So what are we doing about this- well nothing. What happens right now works well,. The boy is happy and learning loads in his own way. Why mess with the perfect recipe!

Just to finish, I wanted to note, that right now, Duncan is engaged in his favourite pass-time, watching Thomas themed YouTube videos. He's found a corker; Thomas meets 50 Cent!) It's better on this site though, with cleaned up lyrics and all.

Go Thomas, like it's your birthday!

7 Sep 2006

We're all learning something!

On my last birthday, I thought about a few things I wanted to do, to be more fulfilled. One thing was to learn to dance, and last night, I went to my 2nd Salsa dance class. After only 2 sessions, I'm hooked. It's great fun, I've enjoyed chatting to the other people there, and I get to dance without needing to wait for someone to ask me to their wedding!

This morning, I took all the children out in the car with me. I went to the dump (as I'd cleared out our garage yesterday) and then we went to the shoe shop and they each got new trainers. I had a bag of mini-marshmallows to dispense when needed, and we managed fine. I was impressed at how smooth it went actually. Lady was great at looking after Thomas. He is always worried about going down unknown stairs, and Lady let him ride on her back so I could keep close to Duncan. Lastly, we called into a charity shop and left with a cuddly rabbit toy, a teddy-phone and a Muppet video (Duncan recognised it from a trailer on another video and asked for 'Pig falling in the water.')

There's been lots of learning happening here. Lady has worked hard at some maths worksheets I wanted her to do. When left to her own devices, she's played with her 'Human Body Explorer' CD ROM, watched her new DVD, (Bugsy Malone), invented endless new outfits for her dress-up wooden doll, drawn pictures and filled in her Brownies book, told stories to the boys using the trains and various props, composed a poem about the guinea-pigs and played outdoors on the trampoline. (She's learnt how to somersault-the other day she wanted mustard on her hot dog; she carried it outside, turned a somersault, and told me it was to shake the mustard!). Whew! That's not half of it, but what I can remember for now.

Thomas and Duncan pootle along as usual. Yesterday, I overheard Thomas asking Duncan to play a Pingu game on the computer with him; 'Duncan play Pingu falling in the water with Thomas? Yes play Pingu?' Duncan obviously thought that was a good idea as they were chuckling away together later, while gathered round the computer.

Duncan has been inputting all the train names into Google and YouTube by himself. I stay close by when he's doing this, to check the YouTube stuff especially. There are hundreds of Thomas The Tank films on YouTube. Yesterday, he was really getting into a film someone had made, with Thomas set to Bohemian Rhapsody by Queen!

Thomas loves the set of Magic Key books I got and asks me to read them regularly, then he gets all excited doing the 'game' at the end of each story. Sometimes I try to be clever and get him to read some words, or notice rhyming pairs, but he snorts in derision and says 'just read the story Mummy!' Fair enough. He is recognising all sorts of words now though, and wrote a letter to his friend in England (who really is called Thomas) ; I LUV YOU THOMAS.
I had to spell you, he spelled luv himself, and he copied Thomas from a DVD. Smart boy, eh?!

4 Sep 2006

Wouldn't it be great if it was like this all the time

Yesterday was one of those magic days that grace us every so often. We just had an easy time and enjoyed each other's company.

I knew it would be a good day from the start. We ate breakfast together; Duncan doesn't usually want to sit with us. Yesterday he wanted bacon and eggs (like in Thomas Comes to Breakfast) and ended up eating 4 eggs (no yolks). He's still so thin and wiry that I'm happy to see some protein getting in there.

Later I had a long bath, and was joined for a while by Thomas, who, as usual, had a great philosophical conversation with me. He's still very interested in the whole topic of life and death and has loads of questions about it all. He was also talking about how he'd be a daddy when he grows up. I asked him how many children he would have, he said, '42...or maybe 3.' He decided that if he had lots of children, he have to buy a castle to live in and then he'd be 'King Daddy.'

For the next few hours, the children played with the trains, Lady watched Bugsy Malone, I read a few stories to the boys and Gordon cooked a big batch of tomato sauce.

Late in the afternoon, we drove to a shopping centre and Gordon bought some clothes for work. I got a large bag of cashew nuts and Duncan stuffed handfuls into his pocket and ate them on the go. We had a look in the toy shop for the Thomas wind-up train he wants. They didn't sell it. He was disappointed, but I told him I would get it on the internet and he was happy with that. Then we went to Mc D's and Lady wanted a meal with the toy so she could get this little music player thing. It plays just one song, but she thinks it's so cool. She said she's now 'a girls-out-loud' fan, (they're usually known as Girls Aloud).

On the way home, we stopped off at a playground. It's right beside the beach, and there are great views over the lough. We were in time to see a massive cruise ship sail by. It was windy, and getting late by then, so there weren't many other people around. For the last 10 minutes, we had the place to ourselves. Gordon and me so wished we had taken the camera. The children had a fantastic time. They all went on the aerial runway, and they're strong wee scoots. Watching them whizz along with a huge gin on their faces and the wind in their hair, I was so happy and proud of them.

As we went back home, we talked about what a great day we'd had. The words of that great Van Morrison song, Coney Island, came into my head and I said to Duncan, 'did you have fun today?' 'Yes, fun today.' What else do I need to know.