Sisterly Pride

Lady

Duncan

Thomas

Lady was just admiring the photo of her brother on the last post, and I was telling her what I'd written about. She said that I should write, 'I don't mind autism because Duncan wouldn't be Duncan without autism and he's a nice boy, he's very funny and he was a cute baby.' She wanted me to include her opinion, so there you are. She also asked me to include a photo of Duncan as a baby and just to show off my gorgeous children, I've put up pictures of each of them.

Another brother and SIL and their children came for a visit on Saturday. Lady and her cousin A (who's just over a year older than her) had a great girlie time together, playing with the guinea pigs, dressing up, making up dances and acting out Harry Potter games. Thomas and my only nephew were together all day, Duncan joined them in building a huge train track in the living room. Gordon had to work in the morning but joined us for dinner, and Dad and G. came in too to get a chance to see everyone. It was another nice, family day.
It didn't hurt that the Irish rugby team roundly defeated the English...in Croke Park!

On Sunday we went to a Potato Fayre; why its spelt like that I don't know. But anyway, there was a donkey, who was coping admirably with hundreds of small children feeding him hay, a horse and trap jogging around and stalls with hundreds of potato varieties. A band was playing, and Lady and Thomas had a go at chucking a welly boot as far as they could, each winning a prize (pens and rulers) for their efforts. I'm making it sound a bit like the fair in Father Ted (the world's worst funfair) but it wasn't quite that bad ;-)

We walked down to the beach after, all the children eating ice-creams in spite of the low temperature and drizzle. Duncan was fine until he saw all the dogs out walking and then he got upset that they wouldn't tickle him!

He (and Lady) desperately want a dog. I'd consider it and could possibly be persuaded, but not Gordon. I recently read about how the Irish Guidedogs charity have been training assistance dogs for autistic children. It appears they have been very beneficial for these children. Now if someone was to offer us a well trained dog like one of those, I'd be pretty keen. But so far, only people resident in the republic are eligible.

Ah well, we've still got Daisy and Crookshanks!

The Burden I Carry?

Today I received a letter from NAS NI, asking me, as a user of their befriending scheme, to fill-in a questionnaire about the impact of ASD on family life, and a Parental Stress Index. They are funding the research, to be carried out at Queen's University Belfast, to assess the influence of the befriending scheme, and to 'highlight important issues to prospective funders.'

Now, I'm not too happy with this questionnaire. It's very much skewed towards showing what a horrible thing it is to be saddled with an autistic child. Every single question on the Parental Stress Index, is about negative traits, feelings and expectations. For example;

I find myself giving up more of my life than I expected to meet my children's needs.
Since having this child, I have been unable to do new and different things.
My child is not able to do as much as I expected.

The Family Impact Questionnaire is much the same (emphasis mine), eg;

Nobody understands the burden I carry.
Fatigue is a problem for me because of my child's condition.
This condition has placed a strain on the relationship between me and my partner.

Now to be fair, some questions (5 out of a total of 65 questions counting both parts of the questionnaire) ask about the positive effects of having an autistic child, in terms of how it may have brought the family closer, and 'learning to manage my child's condition has made me feel better about myself.'

There are no questions about the benefits of the child's autism, as being a lovable, quirky and integral part of your child. The only good thing that's possible, as presented here, is a sort of 'strength through adversity' effect.

I think these sort of questionnaires, can shape how someone feels about things. If the only options on offer, are devastation and despair and problems, you could have a more negative attitude than you otherwise would. I wonder if this questionnaire would ever be considered appropriate for the parents of children with other disabilities, like Down Syndrome or Cerebral Palsy.

I'm not saying that having an autistic child is all sunshine and roses; it's hard work at times, can be frustrating, difficult, tiring. Thankfully, we don't have to deal with the most common case of stress for autism parents; dealing with a failing education system, since I'm taking care of that at home. I'm not having to do the fight for access and services that many must do; not yet anyway. The only thing that has caused me trouble from 'the system' lately, was applying for Disability Benefits, which is an unwieldy and flawed process in need of a serious overhaul.

But I object to the way this questionnaire presents my autistic child as being the likely source of all or most of my problems. And that just isn't so.

I haven't decided what to do about this. I won't fill it in, but I think I will write to the NAS to explain my feelings. I have recently joined this organisation, because it mostly is working as a force for good, and I know some really good people who are helping to make it even better.

Edit: Estee has a great post up about this type of thing: Good Practice in Representing Autism

A few nice days

On Sunday, my brother and his family here visiting along with Dad and G (my step mum). My niece C will be 5 next week, so I made a birthday cake. Gordon made a vat of chili, I made some guacamole. (Lady was eating this, along with a few tortillas, and wanted to know if it was Irish food!) Then I brought out the cake which was demolished so fast that poor Gordon, busy making everyone coffee, didn't get any. He needs to learn that if he's eating when my family are around, he needs to move fast!

It was such a nice day. The children amused themselves all day, playing on the trampoline and in the house. Duncan spent a good part of the day in his room playing with his trains, or on the computer. he was quite content. He and my dad went for a little walk together too. Dad was so pleased to hear Duncan's great reading, and to see the nice little train he's drawn recently. Here's the two of them, playing a kissing game.

The next day, Duncan was quiet and drowsy. He lay beside me or on my lap getting loads of cuddles while I read to him. He has a cold, as do Lady and now me. I was a bit concerned that he's be too ill to go with us on Wednesday, on our trip to the Exploris Aquarium, but he was fine. I just wrapped him up warm and packed a lot of tissues.

Wednesday was an unusually warm and sunny day. I really enjoyed the drive down the Ards Peninsula, past the beautiful Strangford Lough, on clear roads and in my shiny, new car. There's a special light in Ireland, the colours were clear and bright; green hills, brown ploughed fields, blue lake. It was gorgeous. I stopped to take a photo on my way home, and Thomas decided I should take one of him running, so voila!


The aquarium is a great place to visit, though I had to do a lot of running after Duncan, calling to him to STOP...as usual. He remembered that when we were last there, about a year ago, there was a cafe where he'd eaten a pink donut. So of course, getting back to the cafe was his prime objective for the whole time we were there.


We arrived in time for a talk at one of the touch tanks and Lady and Duncan were able to stroke rays, hold a starfish, and pass around a dogfish egg. Thomas didn't want to touch anything. We passed the other tanks and went to watch the rescued seal pups. They will all be released back to the sea when they're old enough to fend for themselves. They were very obliging though, swimming right up against the viewing window in their pool and showing off for us.

Trevor the Traction Engine (as shown with Duncan) enjoyed the trip too.

Big Feelings

I've been trying to write this for a while. It's gone through several drafts and I'm not sure this will express it properly either.

I'm having a hard time knowing how to best help Duncan in some ways. There's so much shouting and wailing and shrieking when he's unhappy. We're all getting overloaded, and each of us, at times, adds to the high levels of noise and anxiety in the house. At some stage every day, Duncan is in floods of tears because of something he wants to be given or have done or because he's just had too much stress. A few times this past week, we were both sobbing, sitting hugging and crying together.

There's so much that I'm grateful for, and every day we have fun and connect and develop, so I'm not in any way ranting about some 'terrible affliction' here. I'm trying to see if writing it down, will help me see what's actually causing this or what I can do or change.

For example, something that's been happening increasingly often, particularly when other children are around for a play, is that Duncan ends up chasing someone, shouting and angry and swatting at them. The other child will shriek and keep running away from him, winding him up even more. I have tried to explain to them all, that they shouldn't do this, that they make him upset and worried and cross when they run away from him. I've asked them to try to stand still and say to him 'don't hit me, that hurts' or even to look really sad or pretend to cry. Duncan always holds back, never tries to really hurt anyone, and hates the idea of making people sad. Many, many times over the past few weeks, I've had to intervene and separate them, often taking Duncan to another room to calm down or to try to distract him. Sometimes it's difficult; he just wants to strike out and I've been the one he vents with.

A really lovely little girl has moved in next door. She and Lady have become great friends and she comes over after school most days. She's been really nice to Duncan and sort of mothers him, which he likes. Her younger brother has been round a few times too. They all get on well and my children are delighted to finally have neighbours to play with; that house having lain empty for over a year.

But yesterday I had to tell Lady that unless they could try really hard, to stop setting up situations where they all start to run away from Duncan, they'd have to play over at their house more often. Yesterday they started playing a game, which I think was instigated by Duncan, where one of them was running after him, saying 'let me see your top', (don't ask!) which he was much happier with. He definitely prefers to be the chased rather than the chaser.

The schools are closed for the half-term break, so another family we're friends with have just been round. The children were playing in the garden, running round getting mucky. Duncan though was with me and my friend, colouring a sheet of paper pink, which I then had to make into a 'Tubby Custard' bowl. He then went out to join the others, and all was well for a while as they bounced on the trampoline. Soon though, Duncan was shouting angrily and running after Lady trying to hit her. The same sort of thing kept happening and he was frustrated and cross. They have just gone home, and Lady and Thomas have gone to their house for a while. It's nice and quiet now, and Duncan and I are chilling out together.

I want to reduce the stress he's under, without stopping them all from having fun. I also need to help him find other ways of dealing with these big feelings, that aren't so upsetting for himself and everyone. We all need to calm the heck down a bit.
autism northern Ireland

Big Thunder Mountain Learning

So we've got a nice, shiny, clean, new (nearly) car, and the first thing we do is to go and get fish and chips. Mind you, these weren't ordinary fish and chips, these were award winning (Millars in Newtownards) and were well worth the price of stinking up the car a bit.

On Monday, M. (NAS befriender) came round bringing a few big cardboard boxes with her. Right away, Duncan was instructing her on how to make a Big Thunder Mountain train, which I was able to finish off later, to his delight. This is his Big Interest of the minute, and he spends ages looking at pictures and videos of it on the web, then asking me make lots of little paper trains. He has also busied himself with writing the words out on paper and yesterday I came across him making a really nice picture of the mountain and tracks using the Paint program. He's also singing, 'She'll be coming round the mountain when she comes' very frequently, complete with dancing and clapping. He liked my version, 'He'll be coming round big thunder mountain...' though he usually asks me to stop singing if he hears me.

Today though he found this poster, and wanted me to draw it. Well, fine, it wouldn't look as good as the original, but I was willing to have a go. I carefully wrote out the words and was colouring them in when a little insistent voice starting telling me to 'fix it, need a Huh, put in Huh' and I saw that I'd written 'TUNDER', but my smart and observant boy wasn't going to let that go by uncorrected. The poster (with THUNDER spelt correctly) is now hanging on his bedroom wall.

What is that thing about following their interests again?

It's such a pity that he won't come with us to Disneyland Paris. I think he'd just love to see this first hand, but he knows best what he is and isn't ready for, and for now, flying is just too big an aversive.

Both boys have been making progress in their reading ability. I can see how reading is already helping Duncan to figure out the words that he hears but can't quite make out. It's also clear that he is using phonics to decode unknown words. I was surprised by that, but it's so interesting to see.

And Happy Valentines Day to all you romantic types!

autism, northern Ireland, autistic, learning

We're not all bigots

I had a total blast at my cousin's Civil Partnership last week. The service was lovely and the couple looked great in their coordinating outfits. They had bridesmaids and flower girls and the whole shebang. About 100 of their friends and relatives attended and it was nice to see so much support for them both. In a week when I read a report that Northern Ireland is the most bigoted place in the world, it's good to see that the homophobes didn't get in the way last Friday. I know that many of our relatives from the older generation who attended, all of whom are devoutly religious, were a bit saddened that it wasn't an ordinary wedding, but they were still all able to accept that this is how it is and to support their niece/granddaughter.

As always, I had some mad crack with my cousins, caught up with one of them I hadn't seen in years, drank vodka for the first time and managed to get a bit of a boogie too. So it was a proper Irish wedding. I stayed at my dad's place that night, and we left before the fighting started. Nah, only joking, it was a nice, well behaved crowd, in spite of all the Derry people there ;-)

I haven't been blogging or reading other's blogs so much lately. First I was spending my computer time researching our holiday and for the past week, I've been looking at cars. We've now decided to exchange our 6 yo Alhambra for a 2 yo Vauxhall Vectra. We'd bought the 7 seater thinking that we'd be taking Gordon's mum out with us often, but that hasn't happened.

But then when I did catch up on news or blogs, it was often just depressing. Like the report mentioned above, or the news about the couple jailed for disgusting abuse of their 4 yo child with cerebral palsy. What the hell kind of world is this?

I got an e-mail from the Aspies for Freedom group, saying that the Autism Speaks (spit) group are making inroads in Britain. We don't need this fervently anti-autism, miss-named gang here. AFF are asking those who support autism rights to sign their petition,though only UK citizens can do so.

To top it all, the UK government is currently re-thinking its position on elective home education, and it's expected that we will be subject to much more regulation at the end of it, which would compromise our ability to provide a customised education suitable to each child and their individual needs. A recently formed campaigning group, Ahed, is seeking to limit the potential for a reduction in our freedoms.

I mean, right now, I'm writing this, supervising Lady's work on her maths, helping Thomas get into his superman suit and drawing a Legoland map for Duncan at the same time (it's just taking a long time!) The vocabulary Duncan is using is amazing; he's telling me where we are going and what we're doing on the map. This would never come under the National Curriculum, but it's what works for my boy.

Wetlands and Weddings

The past week has whooshed by. Yesterday we went to Castle Espie, a wetland centre on the shore of beautiful Strangford Lough. It was mild and thankfully dry day. There were a few other HE families with us. We started off feeding the ducks and geese. The children each had a bag of grain; Duncan was flinging handfuls into the pond before tipping the whole lot out, whereas Thomas scattered mere pinches out of his bag and ended up taking most of it home. I suppose the garden birds will be glad! I took Duncan's Major buggy and he sat in it for short periods. Mostly he ran so, as usual, I had a mini-workout too.

We all had a lovely time. Thomas and Lady enjoyed seeing all their buddies and they all ran and climbed and explored. We ate our packed lunches in a building which Duncan described as 'a big house, old house...Hogwarts!' Oh, there was another HP reference earlier, Duncan was chasing a goose when he shouted 'Rictosempra!' then lifted his foot as if to kick it, mercifully missing, whether by design or by mistake I couldn't tell.

Later today, I'm going to my cousin's Civil Partnership. This cousin, A. was the last born cousin of my generation so she's always been the baby of the family. I'm really fond of her and have great memories of the time she and her Mum came over to stay with Gordon and me in our London flat. She was only 11 then, and it was such a blast taking her around London. She was so excited and enthusiastic, loved everything. She even managed to make people smile on the Underground, when she read out one of the awful advertisement puns, and laughed about it 'cause she thought it was so funny.

Anyway, she's all grown up now and in love with a woman whom I had the pleasure to meet at the previous family wedding. I really hope they have a great day, there's going to be a lot of people going and, to be honest, I'm looking forward to the party!

4/5 Family Holiday

I had this bright idea that we should all go on a holiday somewhere, and taking inspiration from another HE blogger, I started looking into Disneyland Paris. It took a while for Gordon to agree that we should do this, when there are so many good reasons not to. But finally we decided that, if we were well prepared and went with a very open mind and I was wholly willing to spend all my time with Duncan watching the Big Thunder Mountain train, or whatever it was he wanted to do, then we'd manage fine.

So, I tell the children that I'm going to book this trip, probably during March. Right away Duncan protests, he tells me he is not going to Disneyland, he is not going on the aeroplane. I don't try to convince him, but I find some on-line videos of the park and various rides. He really enjoys watching these, especially the footage of the aforementioned Big Thunder Mountain train and the Buzz Lightyear ride. But, he still doesn't want to go. I ask if he wants to stay with Granda while all the rest of us go away without him, and he says yes. No matter what way I put it to him, no matter how I try to reassure him that he'll be with Mummy on the plane and we'll be happy together, or how there are lots of fun things to do and see in Disneyland, he's just not going. He told me to buy him a present, a toy Evil Emperor Zurg.

So I've now booked for 4 of us to go for 4 nights in April, while Duncan stays with his grandparents. It will certainly be a whole lot easier to manage without him, but it's a shame that we couldn't have our 1st ever proper family holiday together. I hope that, if we all enjoy this enough, we might all be able to go again in a couple of years time when Duncan would probably be more willing to fly.

But if not, we can holiday in Ireland, or to be really wild, take a ferry to Scotland!