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Archive for April, 2007

Books for Siblings

siblings.jpgLife with an autistic sibling can be difficult. It’s certainly different. Sometimes a book that’s aimed at children, can help them understand more about their sibling. This list is not exhaustive by any means, but will give some idea of the books that are available.

 The first book comes from the National Autistic Society. Called My special brother Rory it is written by Ellie Fairfoot, a 6 year old girl with a younger autistic brother. Rory can’t talk, but uses Makaton. He has tantrums and flaps his hands. He runs off and has funny obsessions such as liking rubber gloves. It’s a warm book, illustrated by Ellie and would suit children of around 3 to 7 years of age. Written by a sibling it has that feeling of sharing the experience. I’ll list it in the Amazon resources page, but it would probably arrive faster if you order direct from the NAS using the link above.

 

Another offering from the NAS is "My brother is different" by Louise Gorrod.  This is a simple book, again suitable for  younger children. It focuses on behaviours, especially those that might be irritating to siblings; "If I am playing with a game on the floor……. my brother tramples all over it. This is because he doesn’t know how to play games." It also deals with the different rules scenario. One for the autistic sibling and another for other children in the family; " When I behave badly I get told off…….. but my brother doesn’t.This sometimes seems unfair. Mum says this is because I know when I am being naughty but my brother doesn’t". I really like this book, it explains some of the most difficult aspects of autism in simple terms. It’s suitable for helping understand most of the spectrum. I just changed the words slightly to make it relevant to us. Again I’ll provide the Amazon link on the resources page, but buying direct from the NAS may be quicker.

 
The NAS now has a whole range of literature relating to family and siblings. I’ll review others as I read them.

 I was also given the book Ian’s Walk by a friend who bought it for her daughter. Finding that it didn’t really relate to her son with high functioning autism she passed it onto me. It certainly suited our situation, despite being set in America. It’s a little different from the previous 2 books as it is written in the form of a story. Ian is non verbal and goes to the park with his two older sisters. Events that take place on the way to the park provide an opportunity to teach about sensory differences. So Ian watches fans, sniffs bricks and lies on the ground to feel stones against his cheek. On the way there his middle sister Julie finds these differences rather irritating, but after Ian becomes lost at the park she begins to see the world through his eyes. This is a rather sentimental book,  (both my husband and I ended up fighting tears after reading it; 5 year old Joseph remained unmoved) but illustrates behaviours that are familiar to siblings of children with moderate to severe autism. An easy bedtime read.

 I haven’t explored many of the books aimed at siblings of children with Asperger Syndrome (AS). There are certainly some interesting looking titles on the NAS family and siblings page. For older siblings Freaks, Geeks and Asperger Syndrome will do an excellent job of explaining why their sibling behaves the way he or she does. I’ll review the book in more detail another day, but written by Luke Jackson who has Asperger Syndrome himself, when he was only 13; it provides real insight into living with AS during adolescence. Highly recommended. For parents and teachers as well.

 

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I uhmmed and ahhed about buying this: the Max and Friend’s DVD set by Launch into Learning. It’s quite pricey, especially as it has to be shipped from the States. I vaguely remember I ended up having to pay customs on top as well, although I could be mistaken.  Was it worth the money? Well, yes it was.  We bought the volume 1 box set, which consists of 3 DVD’s and books, a parents manual and a music CD. Each module and book focuses on a different ABA programme.

Archie was not an ideal user. We bought it about eighteen months ago when he was 6, and before he could imitate. It didn’t teach him to imitate, but he did enjoy it, and liked me playing the music CD in the car. After learning to imitate recently I dug the set out again and played him the imitation DVD. He did try to copy Max. The content now seems a little young for him in some ways, because we’re trying to introduce him to more age appropriate activities, but he is at the correct stage of development now and I do play it to him sometimes.

 This would be ideal for a pre-school/reception aged child who has recently learned to imitate and follow simple instructions. It would definitely suit families who are running ABA programmes, and would provide an aid to generalising table work.   Archie is non-verbal, severely autistic and this did hold his attention from the first playing. That is quite unusual for him, so definitely something worth considering even if your child doesn’t seem quite ready. There are some sample video clips on their website. I played them to Archie a few times to assess his reaction before deciding to order.

 They are currently running a special offer, with up to 35% off.

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portacomI’m a big fan of the picture exchange communication system (PECS); I’ll write more about it another day. However, one problem we’ve always had is how to manage PECS when out and about. Archie was never very keen on carrying his PECS folders, and would often just drop them to the floor without warning. With one hand on him all the time, I found carrying and manipulating the folders tricky when out and about. We tried various alternative such as  pyramid’s own travel communication book, but nothing worked very well. The travel book did fit easily into my bag, but symbol space is limited, and it still needed two hands to use.

I came across the Portacom system whilst browsing on google.  It was designed by the Canadian mother of twin girls who use PECS. It is a PECS carrier designed to be worn by the child; Archie’s a little tactile defensive still so I wear it, which works fine. It straps around the waist, and folds up with velcro. In the picture you can see it unfolded (which Archie soon learned to do one handed – in fact the whole thing only needs one hand to use so I can grab hold of his other hand). It also contains 2 clear pockets for storing bits and pieces;  mine holds my mobile phone easily. I found that using this our PECS exchanges increased dramatically. There are plenty of other related products available as well. We have a folder.

The portacom is very well made, robust and easy to clean. The only slight downside if you’re using standard PECS folders as well is that the velcro is reversed, so you can’t use the same symbols on the portacom and the PECS folder. I made up a different set of symbols for our portacom; Archie still takes his PECS folder to school.

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The Autistic Spectrum- a guide for parents and professionals by Lorna Wing provides a thorough introduction to autistic spectrum disorders. Easy reading, I found it a useful book to annotate with post it notes and pass onto relatives. I found the chapter on "reducing inappropriate behaviour" particularly helpful for relatives to read. For example it explains the importance of staying calm when faced with challenging behaviours, and not shouting as this very interesting response can increase the likelihood of the behaviours occurring again. It also addresses the eating and sleeping problems so common in autistic children.

 This book does show its age at times. There is nothing for example about PECS, or the biomedical approach. ABA is described as an ‘unorthodox educational approach’; although relatively few people may take on a full time ABA programme, it’s an approach that is now used widely in schools.

 Despite these omissions, it is still a useful book to have on the shelf.

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I didn’t get much sleep last night. For once this was nothing to do with Archie who appeared at a very reasonable 6am. It was his youngest brother Louis who woke up. But anyway, my somewhat befuddled state today got me thinking about sleep problems. Apparently up to 89% of children with autism and 86% of children with learning difficulties  experience sleep problems (see reference); I can well believe it.

 A product that I have always thought looks excellent for those struggling with severe sleep problems is the Safespace. It’s a room, within a room. Custom built it provides a safe area for children with challenging behaviours. It comes with some enthusiastic recommendations from carers. It is expensive but is the sort of product that charities are often willing to fund, or alternatively it could  be funded through a Disabled Facilities Grant (more on them another day, but basically they’re local authority grants, and are not means tested for children). We looked into getting a Safespace to stop Archie climbing up to lean against his window, as well as to improve his sleep. Although we don’t have one yet, our coucil were open to the idea of funding one.

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Last year Archie was quite keen on ball pools. I wanted to get one for the house, He’d well and truly outgrown the toddler versions of tents plus balls available in places like the Early Learning Centre, so my search started  with various multi-sensory room suppliers such as Rompa. I found a lot of fantastic products, but all a bit on the large size for home, and far too expensive for our modest budget.

I then came across Made In Water, a company selling inflatable birth pools. This seemed ideal, their pool is deep, but in birth pool terms quite compact. I ordered one. It comes with an electric pump which makes inflating and deflating easy; another plus. It was cheap, under £60 (including pump); far more affordable than the hundreds needed for a ball pool from one of the sensory companies. It needs a lot of balls to fill it, which does push the price up a bit. I found some on special offer, and a friend gave me several hundred that she was throwing out.

You can see from the photos, all 3 boys love it. It did eventually split (from very heavy use), but this hasn’t stopped it working, it just needs pumping up before each play session- which takes less than a minute using the supplied electric pump.

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Yesterday we went shoe shopping. This is nowhere near the horror it used to be. Archie used to kick the shop assistants as soon as they tried to measure his feet and it needed one person to try and hold his leg steady. When Archie was a pre-schooler I used to travel to Totnes for Conker shoes just because the manager was so understanding. Then, for a while a friend’s sister who owns a nearby Clarkes shoe shop would make home visits to us. We were very grateful. I am however, a  believer in trying to teach the normal everyday things if at all possible. So back to the shoe shops we went.

Shoe shopping, may be much easier than it was, but it still requires 2 people.Not because of kicking but because Archie can’t wait so he runs off (usually into the stock room). It’s a whole lot easier if one person can concentrate on him, whilst the other talks to the shop assistant.

Which brings me onto direct payments. Direct payments have made things like shoe shopping a whole lot easier for us. Put simply direct payments are cash payments made by social services to either disabled people themselves, or, in the case of children their carers in lieu of services. So we were assessed and it was agreed that Archie was entitled to receive services, but instead of providing us with any services we were given the cash equivalent instead. There are some restrictions on how this money can be spent, but we use it to pay for help so we can take the boys swimming, for help during school holidays, for people to play with Archie for an hour after school and for him to go to a childminder on occasional Sundays so his brothers can be taken out somewhere for the day. They have given us a great deal of flexibility and the opportunity to tailor the help we receive to meet our needs.

There are some downsides. There’s a lot of paperwork, but we get excellent support with that from an independent organisation. I can pass my timesheets, cheque books and bank statements onto one of the support workers and she sorts it all out for me. You also have to pay for any advertising you need, but I’ve found that an advert pinned to the local University Psychology department noticeboard produced many excellent candidates.

Some local authorities have been slow to embrace direct payments and I sometimes hear of people being told strange things such as there being no more money available for direct payments in that financial year. This is absolutely wrong. It is now mandatory for local authorities to offer direct payments. If social services offer your child access to a service, and you request direct payments instead, they have to provide them.

© Photographer: Armand Upton | Agency: Dreamstime.com


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