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I’m stuffed!

Posted by Sarah on Nov 29, 2009 in Uncategorized

What a busy weekend we’ve had! It’s 9pm and I can hear that Beth is nowhere near ready for going to sleep. It might have something to do with all the lollies that she had at the movies this afternoon!

We went to see Cloudy with a Chance of Meatballs at the Cameo in Belgrave today. It’s a good movie, one I’ve never heard of before so had no idea what was coming. I was pleasantly surprised. It took a bit to convince Beth to see it at Belgrave because as they don’t have 3D it means that we have to watch it in normal view. It’s a pain in the arse to go to Knox to watch it because it’s hard for parking (especially at this time of year) and usually it ends with lunch or dinner at McDonalds or Hogs Breath which takes the grand total spent to over $100. I got away with it by telling her about all the other movies coming out over Christmas that are also in 3D (the makers have worked that one out alright) and if we did it today we’d have to miss out on one of them. I made it the 2.30 session so it was after lunch and too early for dinner when we came out. Amanda and her kids joined us for coffee afterwards as Paul and Geoff had gone to the hockey so it was a very pleasant afternoon. I was excited because Beth had her first hot chocolate which she loved. Now I can imagine the two of us going shopping and stopping for hot drinks together!

The kids spent most of yesterday at Grandma and Grandpa’s because we had our first open for inspection. That’s why I’m exhausted, I spent half of yesterday cleaning. And half of today trying to maintain it! Now I know why the Stepford Wives acted the way they did, they must have been on something to keep up their beautifully maintained houses! We’ve got hardly any toys out but it manages to get messy just with what we’ve got. And all the floors and tops have to be done each time, if we have a shower we have to wipe it all down and put the towels in the wash so that basically it looks like nobody lives here!

Bridie and I went and bought our Christmas Tree today. Bit of a bargain, $15 at the Reject shop for a 180cm tree. It’s not that wide but by the time we put our hundreds of strands of tinsel on it you can’t see the tree anyway! It’s probably bad luck to put it up on the 29th November but I figure I’ve used up my bad luck for my lifetime so stuff it, close enough. We’ve got somebody coming to look at the house tomorrow. I haven’t put up all the photos of the kids at Christmas over the years so hopefully the tree wont look too personal. Anyway, I’m not not putting a tree up just because we’re selling, that’s not fair on the kids (or me!)

I don’t know if it’s just me but Beth seems to be communicating better this weekend. She’s answering questions quickly and asking questions too which is quite unusual. When Paul and I got to Bev and John’s yesterday after the big clean up she asked me if we had sold the house yet. She’s also been asking about different people and asks why people are behaving the way they are if for example she sees somebody having a tantrum or crying. On Friday Bridie met her buddy and had her teddy bear’s picnic. This is when the preps for next year come to school for a transition day. The buddies are this year’s grade 4 kids and will be the prep buddies for next year. This means Beth also got to be a buddy as a senior. Afterwards she asked Bridie who her buddy was and if she had fun. When we got home she held Bridie’s hand as she got out of the car and was looking after her so she must have seen that that’s what you do with the littlies during their picnic. It’s things like that that are quite new so hopefully things are starting to improve.

 
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Please find below the interview that Donna Williams kindly offered to do with me

Posted by Sarah on Nov 26, 2009 in Uncategorized

A parent, Sarah O’Connor, has started her own blog drawing on her experiences with her autistic daughter, Beth. I invited her to send me some interview questions. Here they are.

SARAH:

I was never sure how to tell Beth about her autism but she in fact brought it up herself, asking why her younger brother and sister didn’t go to Irabina as she did. I told her about our support group and how other friends wished they were in it but weren’t lucky enough to have kids that were autistic like her. I have tried to make it as positive as possible and we talk about it often so that the subject isn’t ‘taboo’. Do you have any advice for parents on how to approach the subject?

DONNA:
I love the way you put it to her. I think that some kids take easily to awareness of autism. I first began hearing the word in late childhood but I thought it meant ‘withdrawn’ so didn’t really think anything of it. I was really shocked in my 20s to learn of it as a disability. I knew I was meaning deaf and struggled to read with meaning and couldn’t easily recognise what I saw and knew creating sentences with meaning was very hard but in late childhood I didn’t understand disability. My mother helped me grasp that through getting me a deformed budgie and explaining it was a ’spastic’ budgie. I had been called, among other things, ’spastic’ so this was my first understanding that animals could have disabilities and I did relate to the bird. I know some kids relate to the examples of some people being more ‘cat’ and others being more ‘dog’ or that some people brains overload like a bucket that has no holes to let out the incoming water. I think explaining autism depends on what’s in each person’s fruit salad. But definitely explaining the postitives is important and in explaining the deficits it’s important to put that in the context of differences in general and that we all have them.

It’s also important to use representational objects, pictures, mind maps, comparative lists to draw these comparisons so it’s not all just blah blah blah that loses most of its content and tumbles the rest. And you can tell such things in an indirectly confrontational manner, through social stories or addressing them to a ‘third person’. Also consider whether you’re going to deliver the info like one big ‘bomb’ or in a ‘drip feed’ of small chunks of information the person has time to accommodate and later you can pull all those pieces together into one poster or book. Plus think about what it is you’re explaining… like for me it would have helped to understand that I was meaning deaf, face blind, object blind, context blind, what tics, OCD, Exposure Anxiety and rapid cycling bipolar each were, what having gut, immune, metabolic disorders means for lifestyle, energy and information processing and how Alexithymia, dyslexia, dyspraxia, hypotonia all add to my fruit salad and alter how I need to do things and pace myself. I also think that each one of these things taught me important spiritual lessons and some of their adaptations and compensations lead to skills. So when discussing deficits its important to paint both sides of those.

And then there’s the discuss of what’s you versus the autism. So some of us have ‘autistic’ personality traits but these aren’t our autism, they might just make us appear more or less autistic than those with less ‘autistic’ personality traits. And I think any discussion of autism needs to include the person and the condition. I think there’s dangers in defining the totality of oneself by one’s condition. At the same time that doesn’t mean the condition isn’t also large part of the person’s history, context and selfhood.

SARAH:

I have spoken to you about music therapy for our kids. How important do you think that music is for children, especially autistic children?

DONNA:

It depends on the child. Some who are meaning deaf and meaning blind may have wonderful musical intelligence and its important to build on that. Also music is a foundation for receptive and expressive language patterning and it is a wonderful indirectly confrontational bridge to being social and daring communication and self expression. Giving kids opportunities to explore rhythms, movement and their own voices is really important. One of the Aspinauts, Paul Spears, is developing a music/rhythm program for kids with the working title of ‘Soundscapes’. He’s a drummer so it involves drumming co-ordinated with lights and using a range of different music sounds to create a kind of symphony effect. You can bet Beth will be on the invite list for any pilot workshop.

SARAH:

What advice can you give me now that Beth is approaching adolescence?

DONNA:

I guess the most important thing is to remember that the emotional age of an autie can be well out of sync with their physical age but also some parts of their identity can be ready for their teens whilst other parts are just getting into childhood. It’s important that girls on the spectrum understand that sexuality is not a rote learned skill and that it’s ok for them to not be ready for sexuality at the same age as non-spectrum peers. It’s important those with autism understand how to take responsibility for their bodies, look after them, befriend them and stand up for their privacy and personal space. I learned some of this through looking after a baby brother, through looking after cats and birds and pot plants. It took decades longer to take all that personally. It was like I was half in a dream in adolescence so it’s a difficult time to navigate when you’re constantly going ‘offline’.

Adolescence is also the time to practice handling random compliments and insults and try new things whilst advocating about one’s limitations. It’s important to keep a practical tone about adolescence because auties will pick that up.

SARAH:
I am leaning towards an autism specific High School even though Beth has been at mainstream Primary School with a fulltime aide. I’d like to ask your opinion on mainstream schools as opposed to special schools.
DONNA:

Again, it depends on each person. Because an autism fruit salad can also mean attachment disorders, personality disorders, co-morbid mood, anxiety, compulsive disorders, so then being in an autism specific school may not necessarily mean other children’s ‘autism fruit salad’ will be the same as one’s own child. I also think we can’t build an inclusive society if non-spectrum people don’t share classrooms with autistic peers.

SARAH:

Beth has a companion dog. She also does horse riding for the disabled and has been swimming with the dolphins. I’m a true believer in animal therapy helping people of all abilities. Do you know of any other recreational therapies that kids with autism enjoy and benefit from?

DONNA:
Skating, trampolining, dance, music, drumming, drama, art, cooking, walking groups… things that can be done with relative degrees of autonomy or solitude yet are still in parallel with others.

SARAH:

As an autie yourself is there anything that you would like to say to any parents that are reading this?

DONNA:
I guess that every person with autism is different so explore what works best with each person. Thanks for the interview Sarah and all the best with your new blog.

Warmly,

Donna Williams, Dip Ed, BA Hons.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.

http://www.myspace.com/nobodynowherethefilm
http://www.donnawilliams.net
http://www.aspinauts.com









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Autistic versus autism

Posted by Sarah on Nov 25, 2009 in Uncategorized

I had a lady berate me a couple of days ago for using the word autistic rather than saying ‘has autism’. It wasn’t directly to me but to one of my new facebook friends Dixie who had kindly posted a link to my blog on her facebook page. As the blogs name is www.autisticchildren.com.au obviously the word autistic is in there. Now don’t get me wrong, I’m not saying that I’m opposed to criticism (though of course I’d rather there wasn’t any!) The lady who wrote was quite vehement about the fact that she hates the term autistic, she said that her son shouldn’t be classified as being autistic but rather that he has autism. I do understand where she is coming from. Several years ago I met a woman whose son has autism. She only has one son and I know what his name is. Occasionally I run into her in the street and we exchange pleasantries. If she is telling me about something that her son has done she refers to him as “my autistic son.” In fact she often uses the term to be derogatory such as “he does that (insert bad behaviour) because he’s autistic.” I find it very uncomfortable. I know that she also refers to me as “another autistic mum”, as in I am another mum with an autistic child. I don’t like it but there’s nothing much I can do about it. I handle it my way, she handles it hers.

Beth knows that she is autistic. She doesn’t have a problem with it, I guess because I don’t use it in a negative manner. It’s just a word after all. I’m glad that I can finally explain to her that she is because it helps me to teach her when her autism is the reason she finds it difficult to understand. For example, I can say to her that she has to be more careful when it comes to traffic because she is autistic. This means that she’s not as aware as other children when on the road, that she might be concentrating so hard on something that she wants that’s on the road that she tunes out the noise of an approaching car. She can then hopefully put this into her mind when we are out on the road. I’ve always hoped that when Beth learns that she is autistic that it would help her to help herself more, be more like the other kids by modifying behaviours that they don’t do. Don’t get me wrong, I don’t want her to not be her, but if it’s making her life unhappy or more difficult then of course I am going to try to help her.

I’ve had mums say to me “oh, you’re one of those mums are you” when told that we’re trying the chellation therapy or other treatments over the years. They’re always mums of kids with autism. People who don’t have autistic kids don’t pretend to understand or judge generally. I guess it’s like ex smokers. They’re much more severe on smokers than people who have never smoked in the first place. I think some people think that I’m just not accepting the diagnosis or that even worse, I clearly can’t love Beth for who she is. I do accept that Beth is autistic, I’m just trying to make her life better for her sake. It’s not trying to fix her, it’s trying to heal her as much as I can. What’s so wrong with that.

Anyway, I do apologize if I have offended anybody, that wasn’t my intention in any way. I personally don’t have a problem with using a word to describe a situation. I have a problem with alcohol, I am therefore an alcoholic. My friends mum has diabetes, she IS a diabetic. Beth has autism, therefore she IS autistic. She’s not MY AUTISTIC DAUGHTER but she is autistic. And it has to be somewhere in the title of the blog, how else would people find it on the search engines. Donna Williams, the adult who has autism that I have spoken about, calls herself The Naughty Autie! I love that. I consider that title to be very apt for my Bethie in fact! There should be more people like that.

 
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Robert Kennedy Jnr

Posted by Sarah on Nov 23, 2009 in Uncategorized

I’ve just finished watching a You Tube clip that was fascinating. It was Robert Kennedy Jnr talking about the link between vaccinations and autism. It gave me goosebumps watching it, it was so rivetting. The more I see things like this or read books such as Jenny McCarthy’s ones the more I think that there has to be a link. It just makes sense.

Here in Australia, in my opinion, our whole medical and government system of dealing with autism is incredibly archaic. It’s just recently, within the past 2 years, that the government has put into place an autism initiative package that enables parents of autistic children to seek services that they require for their children. Children who are pre school age, up to 7, can use $6000 per year to get various therapies for their kids. The waiting lists can be long and the paperwork and assessment can be just as exhausting and frustrating as parents realise their time is running out to use this money. Many therapies weren’t prepared for the huge amount of people putting their hands up so that held up much needed therapies.

When Beth went to early intervention we were lucky as we could access one whole day of therapy a week. We had been told that people used to get 3 days per week but we were pleased with what we could get. Now the same early intervention program offers up to 2 hours per week for the same fees! The waiting lists are incredible. All the research has showed that early intervention is the vital key to helping our kids and we can get assessments early (if we’re lucky) but unless you can afford to mortgage your house to the hilt to afford intensive one on one therapies, then we have to say “thanks very much, we’ll just wait it out then.” Don’t the Government realise that if we help these kids at the beginning then they are less likely to be a burden on society when grown. To coin a phrase – der Fred!

We with older kids aren’t left out either. We can access 20 subsidised visits to a health professional (ones approved by them, whoever ‘they’ are) over the course of a lifetime. Of course these aren’t free visits but if going often enough we get over the Medicare threshold fairly quickly so we get more money back. We’ve nearly used all of these up now as we decided to use all of them up as soon as they were available. Who knows if they really will be available for ever, we’re best to use them now and see what happens in the future.

There are other schemes such as Enhanced Primary Care which are 5 subsidised visits each year to a health professional for a chronic condition. Also the Mental Health scheme which offers 12 and sometimes 18 subsidised visits per year to a Psychologist and in some cases such as ours, an Occupational Therapist. It’s wonderful that we have such things. They can be difficult to get, some from doctors, some from Paediatricians. The autism initiative package for example requires a one hour visit to the paediatrician at the cost of approx. $250. I waited for the questions and the form filling to be done by our guy only to be told that no, that’s fine, we just needed to see him and he would do the rest. When asked why I needed a one hour appt for something that took 15 minutes I was just told that that’s what they had to tell people when they called. I was even shown the page printed out, sent to them by goodness knows who, to tell them that this is how long they have to make the appt for and this is how much they have to charge! Of course you could claim some of that back, but you had to have it in the first place!

One of our doctors is continually amazed at Australia’s lack of system when it comes to our autistic kids. He migrated here from the UK where he says when you get a diagnosis you get put into their system. All of the resources are available to you and there are no waiting lists. I’m not sure about costs but still, how nice to know what services are out there.

It’s such a horrible time when you first get a diagnosis without having to try to figure out the mine field of what is out there, what is a genuine therapy and who are charlatans trying to rip you off. We’ve been very lucky in finding some wonderful therapies and have found various treatments such as Cranio Sacral Therapy to work wonders for our Beth. But, we’ve had to find these ourselves.

Sometimes the doctors can be the stumbling blocks themselves. Going back to the whole vaccination / autism theory, the doctors here in Australia just don’t believe in this at all. I don’t know whether it’s what they’ve been told or taught but it’s a real battle to get doctors to even consider that anything but traditional medicine works. Of course they can’t tell us why our kids are autistic in the first place but that seems to be besides the point. “We don’t know why Beth is autistic but don’t try any of these things because they just wont work!”

So I’m supposed to just say “Thanks very much for that diagnosis, shit happens, I guess I’ll just get on with it then shall I!” Not bloody likely! Our kids are the way they are because of something. Just as they are all different in their autistic ways, so are the reasons why they became autistic. It may be because of the vaccinations, it may be because of something we ate when pregnant, it may be because of food intolerances or a combination of all three. It could be any number of things. Lets treat them as individuals, try anything that doesn’t hurt, we might just happen on the one thing that actually works.

One thing that stuck with me in the Robert Kennedy Jnr speech was about an Amish Community that has 30,000 people. They don’t vaccinate their kids. Now he isn’t saying to not vaccinate, just to vaccinate with no metals. In this Amish Community there should be statistically 130 kids who have autism. They have only 4. 3 of them were adopted after they were immunized. One live downwind of a chemical plant. At least in America they’re admitting that it could be possible, that mothers could be right about their kids. They have doctors who are called DAN Doctors, or Defeat Autism Now. I hope that one day we can have doctors who will at least consider that it is possible to defeat this. Sadly, I think it’s still a fair way away yet.

 
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A Haggy Christmas Party

Posted by Sarah on Nov 22, 2009 in Uncategorized

First I have to say “Go Stan, very excited that he won Australian Idol!”

We had our Chrissy party today for the HAGS group. It was a fairly quiet occasion but I think everybody had a good time. It was a bugger of a day weather wise, it poured from about 7pm last night right up until party time so there was no way that we could get outside at all in the playground area. We were going to book a jumping castle but it was too expensive so that was just as well as we wouldn’t have been able to have it anyway.

Donna was going to come along and do some music therapy / entertaining with her band but she had to pick her husband up from the airport this morning and his plane got delayed so she couldn’t make it. We’ll have to tee up something in the new year because I think she would make a great therapist for our kids because she gets what they want and where they’re coming from.

We had a couple of new faces at our party today which was nice. Michelle came along with her 2 boys Marcus and Jesse. I met Michelle at our school and she’s not long had a diagnosis for Jesse so it was lovely that she came along. She’s been to a meeting before but it’s hard because Jesse isn’t starting kinder until next year and she’s also got a little girl who is a toddler. I know what a difficult time that is, bloody exhausting! Maybe next year she’ll have a bit more sanity time!

Libby came along with her husband Scott and son Anthony so that was lovely too. We met Libby when she came along to a meeting to check out the HAGS as she’s very enthusiastic about advocacy for schools and is very proactive. She’d heard about the HAGS group and wanted to touch base. As people do, she fell in love with us, and the rest is history! She’s been out to a few dinners and coffees but it was the first time that we’d met her partner and son.

Amanda and Geoff were there with all their mob, along with a very popular chocolate fountain which was heavenly. I’m thinking I might have to get me one of them babies, delicious!

Margaret and Alan came along with Megan and Richard. Their kids are the oldest in our group, being teenagers, so it’s always good to get information from one who’s been there before. I love Margaret, she comes along to pretty much every meeting and dinner and we’ve become good friends. In different circumstances we probably wouldn’t even cross paths but over the last 2 years we’ve slowly got to know each other. Her Richard is one of the kids who was doing Karate with Beth’s group. When it disbanded he then went into Bill’s class at the earlier time of 4pm. At 14 he is the oldest in the class but he doesn’t seem to mind. He’s just got his ghee (sort of the karate uniform). When Margaret asked if he wanted to get one his response was what was the point in doing this if he wasn’t going to get a uniform and be graded! Ok, that’s a yes then! He makes me laugh as he says what he thinks. Today I said hello to him and he looked at Margaret and said “Do I have to talk to these people today?” She said later, sometimes he appears so normal, but sometimes…..

Linda and Sean came along with little Jack too. Jack seems to be doing really well, he’s imitating a lot which is great, he’s attempting lots of words. He’s off to school next year and I’m sure that’ll be a bit of a relief. I hated that kinder year, it’s so stressful not knowing where you’ll be going and whether your child will cope allright. They say the primary school years are the good years, preschool are a nightmare, then later on puberty comes and bites you on the bum! Not long to go now for us then!
Margaret

 
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A good Speech Session

Posted by Sarah on Nov 19, 2009 in Uncategorized

I thought I’d try and squeeze a post in before another day of bedlam begins. I woke at 3 this morning and just couldn’t get back to sleep. We’ve got new tiles in the ensuite, new carpet in the lounge and kids room and a fabulous looking yard so it’s all coming together!

We had Sensational Kids yesterday and it went really well. Beth has Occupational Therapy with Melinda first then Speech Therapy with Rod. She seems to enjoy doing the Occupational Therapy but does do a lot of mucking around and often Melinda will say that she seems distracted or not wanting to participate very well but then she’ll surprise me and have a great session with Rod. Beth seems to like Melinda and enjoys doing her sessions but she doesn’t get as much out of it as we do with Speech. We can claim Occupational Therapy back from Medicare under the Mental Health scheme so I’m not sure if I would keep it up if we couldn’t do that.

Melinda is focussing on Beth using both of her hands together, something that she hasn’t really done much of. When we were in the early years at Irabina I remember telling them that when she eats she plays with her food with her left hand while eating with her right. They started making her keep that hand on the table and subsequently she hasn’t really picked it up again. She still has problems with her eating, constantly fingering her food. Even weetbix, she feels the need to touch it all the time. Beth rolls her food a lot too and sometimes takes her food out of her mouth to inspect it before putting it back in again.

On the plus side she eats pretty much anything and everything. I know that food is often a problem for autistic kids, whether it’s texture based or colour based there are often ‘rules’ in these kids heads as to what they can eat or can’t eat. I remember taking Beth to a Psychologist when she had her selective mutism. I was told that I was lucky that the ‘not talking’ was the rule that she had chosen. She had seen children who were on drips in the hospital because their rule was that they couldn’t get anything solid down their throats. In that sense we are very lucky, Beth eats well and she eats a lot.

During Beth’s Speech session yesterday she chose a game that we hadn’t played before called Amazing Me. It was a great game for her because it was all about answering questions about yourself, family and friends. Some of the questions she found difficult to answer but Rod and I gave examples of what we would say to give her an idea of what was expected and she picked up the cues pretty well.

On the way there yesterday Beth was chatting to herself and I think that it was from a Simpsons episode or perhaps the movie. She would say something like “when Bill gets older he will have a father that cares about him.” Not sure what it was all about actually but it was still going through her head as we played this game. One of the questions was “what would you change about your family?” Beth’s answer was that sentence “When I get old I will have a mother who cares about me!” Thanks for that Beth, makes me sounds lovely! Rod said that in his instance that he wished his mother saw his kids more often. Beth then kept insisting that Rod’s mother must be dead. As my mum died when I was thirteen I sometimes talk to the kids about her. Bill often talks about how much I must miss her and I tell him that yes I do, especially now that I have my own kids and wish that she could see them. This has obviously stuck in Beth’s mind. But, as only Beth can do, she harped on it over and over. If Rod had a question that didn’t involve his mother Beth would say “that’s because she’s dead!”

There were questions that Beth surprised us and gave some excellent answers to. One was about what she would do if a man offered her a lolly for a kiss. She answered that she didn’t talk to strangers and that he had to go away. When Rod asked her why, she replied that it was dangerous. Now if that was me asking I would have just been happy with the fact that she had said no. Rod pushes for that extra bit of information which is great because her first response could have just been a rehearsed type of answer, we still needed to know if she ‘got’ why she was saying no. When it was mine or Rod’s turn Beth asked the questions of us and in an Oprah style fashion would proceed to answer the questions of what she would do in the situation first. Then she would turn to us and ask for our answers.

One of the questions that Rod asked was that if she didn’t do well in a test what would she do. When she wasn’t sure what to answer Rod said that when he was a kid if he didn’t do well he’d cry. Beth answered that she would get angry. While I don’t think that she really would, she understood that a type of emotion was needed and that anger would be an appropriate one.

The amusing thing about the session was that instead of accents the two of them decided that a lot of their answers would be done with burps! Both of them can burp speak. One of Beth’s questions was 3 things that she could say about herself. She burped that “I can burp my abc’s, and I can burp my 1, 2, 3’s.” I can’t remember the other thing but the 2 of them were so caught up in the burping side of it that at that stage it didn’t matter. Rod certainly knows how to get down to the kids level to engage them, I’m not sure which one is the bigger kid!

 
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Busy times

Posted by Sarah on Nov 16, 2009 in Uncategorized

Sorry I haven’t had a chance to write recently, we’ve had so much to do to try to get the house up to scratch for selling so haven’t had much time. Mind you I did manage to fit in a shoe party on Sunday! We’ve hired a storage unit to get rid of a lot of clutter, we’re getting carpet put down on Wednesday and the yard cleared, also new tiling done in the bathroom so it’s all go go go.

Not much to report after our visit with Richard Malter on Friday. He asked how I felt about how Beth was going. I told him that I hadn’t seen as much improvement as I had hoped. We got quite an improvement with the Mercury chellation but getting the virus out, which is meant to be the big difference, hasn’t really shown much at all. Her levels have gone down considerably so the virus in the brain is nearly all gone. We’re now starting on the liver while doing the brain still. When doing the brain virus we had given the flaxseed oil 4 times a day. After each time we put the magnet onto her middle finger for five minutes and then onto her other middle finger for five minutes. With the liver it’s on one point of her tummy for five minutes, then another point for another five minutes. Richard suggested that we also do the five minutes on each finger to make sure that we’ve got all the brain virus. I decided that I’ll do that at home which counts for 3 out of the 4 daily doses, but when at school she can just do the tummy one. It’s a big ask to expect them to do this every day anyway so don’t want to make it any harder for them.

Richard also said that he treated a boy who had learning difficulties but was not autistic. This boy only had the liver virus and after he was treated he didn’t have any learning difficulties. He explained that the gut can effect the brain in lots of ways which I readily accepted. After all, look how alcohol effects the brain. He also told me that her moods will escalate during this time because it’s such a sensitive area of the body. Great, thanks for that!

When Beth was younger I remember taking her to our paediatrician and asking about the theory about gluten and casien diets for autistic kids. I was made to feel like such an idiot for even suggesting the idea. In fact the response was so vehement I remember it to this day. Basically “don’t tell me that crap is going around again” was what I was told. I felt humiliated and dumb for even suggesting such a thing. Now look how common gluten intolerance is! Talk to anybody who didn’t know they were gluten intolerant who now is on a gluten free diet and they’ll tell you how much better they feel. We did in fact try Beth on a gluten free diet but it really made no difference. Richard Malter tells me that with this virus in Beth’s gut it wouldn’t matter what she ate it wouldn’t agree with her. I guess we’ll revisit that again after we’ve finished eradicating all the viruses.

We came to the decision on the weekend that Beth is giving up horseriding. It’s been good for what we needed and did build up her core strength but she just didn’t enjoy doing it. Each week she would say that she didn’t want to go and when she was there she was making lots of excuses to try to get off. Also, once Marion left it wasn’t the same. I’m still trying to find the “thing” that Beth loves so much, that passion that they say autistic kids have about something. There’s lots of things that she enjoys to do but nothing that we can use, for want of a better word, to our advantage.

We’ve got our hags Christmas party on this Sunday and Donna Williams is coming with her band to play so that should be good for the kids. I’ll be interested to see how the kids interract with Donna as I’ve spoken to her about doing a music therapy program. I think she’d be fantastic because she’s been there herself and hopefully will ‘get’ our kids. Beth did do piano in grade 1 but just didn’t apply herself, maybe now that she’s that bit older she might find that she enjoys it more.

 
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Off to Doctors again

Posted by Sarah on Nov 12, 2009 in Uncategorized

We’re off to see Richard Malter again today so wish us luck! Beth’s been having the flaxseed this time around for 5 weeks. Last time it was for 3 weeks and he said that the virus was 2/5 gone so let’s see how we go. I’m looking forward to the next phase which is supposed to help her gut. Beth has always been a very pale child and has dark circles under her eyes. She also has to go to the toilet often with the runs so this should help clear all those gut problems out. I think that’s when we’ll start seeing changes, at least in mood, because she’s never known what it’s like to not have this.

We’ve had a pretty good week so far. Beth had swimming lessons on Monday and was very good for Debbie. I decided to implement the reward system instead of the punishment system in regards to her handstands. I told Beth that she could have an icecream after her lesson if she promised not to do any handstands. It was ok if Debbie said she could or if it was as a reward for swimming a good lap but other than that she was not to do any. There was a couple of times when she went to do it but self corrected herself so all in all she did really well. It’s amazing when a strategy that you’ve been taught actually does work! In all the books on parenting they say that talking of punishment focuses on the negative whereas to talk of reward focuses on the positive. I know it’s true but of course sometimes you’re at your wits end and it’s not always that easy. And there is satisfaction (horrible mum) in punishment at times when you’re feeling so frustrated or angry that you just want to lash out and say “that’s it, no more such and such” but generally it doesn’t work. I wish that I could say that this is how I always parent but of course I am only human!

Something else that Beth has been doing has been very clever but very cheeky. She’s always done this to an extent but is now pushing the boundaries or more to the point pushing me to the limits that I know she likes to do! She’ll make out that she doesn’t know how dangerous something is and pretend she’s doing it. An example of this was when I picked the kids up from school the other day. Beth went and sat in the car and found one of those freshness sachets that come in so many things, you know the little white ones that have “do not ingest” or something like that written on them. It must have come out of something that we’d opened in the car and anybody who knows me and my family will know that my car is generally a little messy (a slight underexaggeration there!) Anyway, I get in the car and there is Beth holding this sachet up over her open mouth as though she’s going to drop it in. Of course I went off at her and she settled back in her seat to have a wee giggle to herself! Now if I hadn’t noticed her doing it she would have asked me something like “what does ingest mean Mum?” or “what would happen if I swallowed this Mum?” just to get the point across that she supposedly didn’t know it was dangerous and wanted me to know that. Don’t underestimate the mind of your child, they’re often a lot smarter than we give them credit for.

When I think about it Beth has often done things like this that she knows will get me riled up. She went through a smashing plates and glasses phase for a while there which was fun. She loved the noises it made and I was just glad that she didn’t realise how spectacular it would be to smash a television! She was about 4 or 5 at this stage. Often though it wouldn’t be until I came into the room that the plates would break, she’d stand there with them in her hand quietly then when she spied me out of the corner of her eye she’d let them go. Similarly she’d do this with eggs at Bev and John’s house, going into the fridge and getting the eggs out then waiting for us to come and see what she was up to. Then she’d drop them and laugh to herself at our reaction. I’m so pleased that I’m entertaining to my child!

 
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Our lovely Minkie Moo

Posted by Sarah on Nov 9, 2009 in Uncategorized

Sandy Point

Sandy Point


You’ve probably heard me talking about Minka, our lovely black lab. She’s a companion dog, or, if you like, a reject guide dog. (For the Australian readers, a John West dog!) Here in Australia we have a Guide Dog association and every year they sell off maybe 6 dogs that didn’t quite make the cut as guide dogs. These go to special needs people. I had heard of them a while back but as we had an old maltese that was outside most of the time we didn’t think it was fair to get another dog that would be predominantly inside. When Molly died I called the Guide Dog association and got put on to their vast waiting list. We were on the list for 2 years before we got her but she’s well worth the wait. (There is now also an association that breeds and raises puppies especially for autistic kids called autism assistance dogs. They’re called Righteous Pups and are based in Geelong. I don’t know how long their waiting list would be.)

During this time I met my friend Dom, her daughter Chantelle and their dog Zeea at the local park. I noticed that Chantelle was autistic and picked Dom up for the HAGS Group. Dom then told me about her dog being a companion dog and how they’d only had him a few weeks but what a difference he’d made. I also read a book called A friend Like Henry about a boy in the UK who was autistic and how he was helped by the love of his dog. It was so inspiring to read and made me all the more excited about our upcoming arrival. As Beth kept waiting and waiting I bought different things each month to make it clear that yes, it was happening, just not yet.

 When we first got Minka Bridie was really scared of dogs so I made sure she was delivered when it was just me at home. I was so worried that if they saw that Bridie was scared that they would change their mind. I took her round to pick up Bridie then took her off to school to pick up Beth and Bill. All 3 kids took to her straight away and school even said that when she settled in that she could come to school with Beth in her companion capacity. Problem was we soon found out why she was a reject!

Minka loves to sniff so pulls you all over the place if she can. She also loves other dogs to death, so if off for a walk she gets very excited when she sees another dog and is very hard to control. And she loves to chew things, something we’ve found out if we’ve left her alone for a little while, she’ll chew something up or get into the bin. And lastly, and it’s a goody, believe me, she likes to poo in the bedroom when she first checks out a house. She did it when she first came home, then when visiting my friend Prue (just after getting her carpet steam cleaned I might add) she disappeared for a while. I could smell something and upon investigating found it! And as I’m sure you all know, a lab doesn’t do small dainty poos either!

I had a conversation with an old friend about it one night and we were in fits of laughter. Imagine a blind person getting up in the morning only to swing his legs over the bed and them landing in one of Minka’s surprises. Then reaching out for his cane only to find that Minka had chewed the end off. Finally going off for a walk only to be dragged across the road in front of a truck so that she could sniff another dogs bum! That’s why she didn’t make it to guide dog status!

Beth does adore Minka and she has her to sleep in her room. I was pleased that we didn’t get a boy dog because I was worried that Beth might be playing with his penis the whole time. My friend Catriona informs me that yes, that’s exactly what her son does with their dog so it wasn’t just me! Of course Beth always wants more. She wants a little lap dog too cos she can pick them up and carry them around. Prue has a little dog by the name of Grizzabella, Minka’s best friend. Beth loves Grizzy and every time Prue is visiting the dogs mysteriously goes missing. Every time they’re over Beth asks if she can keep Grizzy and we patiently tell her that no, Prue and the kids would be very sad if they didn’t have her anymore. When it comes time to go we’re searching high and low and Beth swears blind that no, she didn’t know where Grizzy was. Then we’d find her in the cupboard or in the toybox half an hour later! Beth’d be in her room by then and later would slip out quietly and go to her hiding spot. Then you’d here the wail “oooooh, where’s Grizzy gone, Prue said I could keep her!” Don’t tell me autistic kids don’t have imaginations or can’t lie for that matter!

 
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Cheeky girl

Posted by Sarah on Nov 9, 2009 in Uncategorized

Beth has been getting very inventive of late in her quest to get her way. She’s always been a bit like this but is using the power of the pen to do her dirty work now!

On Saturday she kept saying excitedly that Alvin and the Chipmunks was on the telly that night. She’s usually pretty good about these things because she pours over the TV guide when we get it. It wasn’t on though. She kept arguing that it would be on and in the end I brought up the TV guide on the Internet to show her that no, it wasn’t on that night. Beth kept saying “it is on, it’s in the TV Guide.” I suggested that maybe it had been down before hand but then they changed their mind and decided to play something else. Then Paul realised that what she had been writing in the car was in fact her changing the TV Guide. She had crossed out War of the Worlds and written over it with Alvin and the Chipmunks!

A similar thing happened on Sunday. We were going to Bev and John’s house for a barbeque with friends of theirs that had a little boy a year older than Bill. Last time we went to the movies we saw an ad for a movie that was coming out called The Fantastic Mr Fox. It’s not actually coming out until January but Beth had in her head that it was coming out in November and that we were going to see it on Sunday. Grandma and Grandpa’s house just wasn’t going to cut it! When we got to their house I looked up the movie guides for her and showed her that no, the movie wasn’t out yet. Her answer was “but I wrote it on the calendar so it must be true!”  I think she’s must have been  watching The Secret!

She’s actually very good at using her imagination when it suits her. If you try and get her to do any homework  there’s not much hope unless it’s something she’s really interested in. When she’s writing about something she enjoys she puts her whole self into it. She made a sign for her bedroom when she first moved in there. She drew herself and Minka, Bill and Bridie. She wrote on it “No boys or brothers, no sisters or little girls. Only 10 year old girls and dogs allowed.” She put crosses through Bridie and Bill and ticks for her and Minka. It took her a long time too but you could tell who they all were, she’s got a good eye for detail.

When at my aunt and uncles house one day I asked Peter and Margaret if they had any chalk. They got some out and I got her doing drawings on their paving of the Mr Men and Little Miss characters. You could tell which was which down to their freckles and the way their eyebrows slanted. She remembers everything like that. Before she could read we used to sit and read the Mr Men books and she would make me test her on the 50 or so pictures that are on the back of each book. She knew who they all were and what colours they were and would recite them endlessly. Now that they’re back in vogue and revamped she’s found a new love for the Mr Men characters, in fact I’ve bought her a Mr Men annual for Christmas. (I always have fond memories of my childhood Christmases when every year I would get an annual of some kind, usually Rupert the Bear. I loved how there’d be games and lots of stories and puzzles.) I think Beth and Bill, now that he can read, have this love of books too. Hopefully Bridie will follow suit.

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