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Archive for June, 2007

Crelling Harnesses

crellingegHave a close look at the photos of Archie. He’s wearing a belt harness. I bought this when, aged 5 he ran out of a newsagents, and onto a main road. I had to dump Joseph in his buggy and my money and just run. I was pregnant with Louis and only caught Archie up before he hit the road because he turned round to laugh at me. We were employing a very wonderful speech and language therapist at the time who was hugely experienced with autism and she told me to get a grip, and buy a set of reins that would fit (I had ‘but what will people think’ issues).

Which brings me onto Crelling harnesses. They supply all sorts of harnesses suitable for special needs, from ‘Houdini’ car seat harnesses, to walking reins.  Their products are high quality and their customer service excellent. If you need to ring them for advice you’ll find they’re extremely helpful and knowledgeable.

The belt allows me to go out with all three boys when I have to. Louis in his pushchair, Archie wearing his belt, Joseph being repeatedly told to behave…….. It also allows me to stop and tie up a shoelace when I’m out alone with Archie. If you have a runner, as I do, highly recommended.

June 29th: Just a quick update. Jenny from Crelling harnesses has contacted me to point out that Archie is wearing the belt back to front. The buckle should be at the back (making it harder for a child to undo), with the PVC sleeve at the front and the rein strap passing from in front of the child’s waist. This is particularly important if you have a child or adult who is strong as it ensures the strain is on the webbing strap- which is very strong. The way I have it in the photos the strain is on the sleeve. For the moment, that’s OK for us, but I suspect I should stay one step ahead and start using it properly.  

 crelling2

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DLA & Mobility

dreamstime_1612636I’ve just been to renew my Motability car. It was very easy and quick. The same can’t quite be said of applying for mobility in the first place.

 We first applied for DLA when Archie was 3. The form was and is, as many will happily tell you, shocking. Pages and pages of the strangest questions. At the time Archie was being assessed and we were able to get a lot of help filling in the form from a social worker. After submitting that claim we received higher rate care with no mobility. This was probably a fair decision; as a three year old Archie was fairly easy to handle in public although he required constant attention. It was when he reached the age of 5 that things began to get more difficult, and it was after he pulled himself free from my hand and ran straight in front of a car that I decided I needed a blue badge so we could use disabled parking bays. Looking into it further I found that if we were awarded higher rate mobility we would automatically qualify for a blue badge. So I telephoned the DLA ‘helpline’. A misnomer if ever there was one. I was told by an increasingly stroppy operator that there was ‘no way’ Archie would be able to receive mobility as you had to be ‘unable to walk’. Luckily I had already done my research and knew that this information was incorrect. So I requested that the forms were sent out anyway. ‘You won’t get it’ were the final words.

OK so I knew it was going to be tricky! However, the information I needed was all out there and freely accessible via the NAS website . In fact Archie passes the tests for higher rate mobility quite easily as he would score below 55 on an IQ test (untestable). Rather than repeat all the information here, have a good look at the NAS link. It was a great help. In the application I mentioned that Archie has no sense of danger, that his lack of understanding of language means he cannot understand shouted instructions, that he has no road sense, that he requires someone to hold onto him the entire time we are near roads, and that he  wears a safety belt when we are walking near traffic. Finally I asked the decision maker to consider the Megarry (1999) case when considering my application. This case, concerning an autistic child went to the Court of Appeal (Megarry v Chief Adjudication Officer 29.10.99) and found that the definition of ‘severe impairment of intelligence’ should not be defined exclusively by an IQ score.

I sent the  application off, crossed my fingers and we were awarded higher rate mobility. We then applied for the blue badge, and ordered a Motability car. These have made life considerably easier. The moral of this story being dont believe everything the DLA ‘helpline’ tells you, and if you think your child qualifies do your research, get some help with the forms and fill them in.

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After reviewing the Time Timer the lovely people from Robo toys in the Netherlands contacted me. They’re the European distributors of the Time Timer and offered to send me a Time Timer Watch Plus. It arrived earlier in the week. They sent the adult version as Archie will not tolerate watches on his wrist. It was actually amazingly good timing as my own watch had broken a few days previously.

 It’s comfortable to wear, quite chunky (which I like). It has both a normal watch mode and a time timer mode. The big advantage is that you can count down up to 12 hours, rather than just one. It does this by repeating the countdown circle every hour together whilst displaying a stopwatch counting down. At first I thought Archie might find this difficult to understand but he’s  been fine with it. I think being familiar with the larger, easier to understand clock helped with this.

 
Once you’ve been through the settings with the instructions it’s easy to use. A light means it can be used in the dark. Very useful in this house. It had its first big test today. Archie got up in the middle of the night. Ran to the room his younger brothers share and proceeded to shout. He was not keen on leaving their room and kept running in. If all the children wake in the middle of the night then next day is practically written off. I persuaded him to come into my bed, set the Time Timer watch for 90 minutes, showed him, and he stayed there until it had counted down. He did spend the last 10 minutes trying to leave, but did follow the watch.  Once it reached 0 he leapt out. The watch has an alarm, like the clock this is just a quiet unobtrusive beep. These products have been incredibly useful for us. Highly recommended. Like the Time Timer clock, this watch can be ordered in the UK from Ed-Solutions Direct.

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Everything VB

Apologies, I am overwhelmed with work at the moment (I’m in the middle of a research project analysing the way severely autistic children interact with parents, therapists and teachers. Fascinating, but time intensive). Therefore these entries are a bit rushed.

 

I thought it was a good opportunity to share this site  about VB. Largely because it speaks for itself and doesn’t need me to say much. I only discovered it this weekend so can’t give you the ins and outs anyway.  VB Community; it looks fascinating.  We’re not following a ‘pure’ VB programme at home. As I’ve said before we’re using a ‘whatever works approach’. Something we have taken from VB is the idea of using fast trials to improve executive function. Archie has a terrible time responding on demand on time, and fast trials are meant to help with that. Using fast trials also allows us to squeeze a lot of trials into a short space of time after school. You can see a video of a tutor using fast trials here.

 

It looks like a good place to advertise for VB tutors.  Always worth remembering (although my big tip is to seek out psychology students from your local university if you have one; a small ad on a noticeboard has always generated lots of enquiries for me).

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Enzymes

It always seems to take me a week or so catch up after a school holiday. We’re having the front room decorated at the moment so it’s chaos here. Hence the recent silence.

 I’ve been meaning to write for a while about digestive enzymes. Enzymes are used by some people as an alternative or supplement to the gluten/casein free diet. The enzyme resource on the web can be found here. I’m not going to even try to summarise the information there, suffice it to say that enzymes offer a good alternative if for some reason you don’t want to try the gfcf diet, and some people have switched from the gfcf diet to enzymes with excellent results. Even if you are well stuck into the gfcf diet they’re worth browsing as there are enzymes that help digest phenols which can be a problem for some. As always it will come down to individual responses and you may need to experiment a bit.

 If you’re interested in using enzymes the book you need is by Karen DeFelice- Enzymes for Autism and Other Neurological Conditions. It’s one of the books offered as a free gift if you join Treating Autism. It’s very detailed and includes some gems such as recipes for making up Epsom salt creams (I had been searching everywhere for one).

 

Enzymes come in different forms. Powders or capsules. Trying to get supplements into Archie always gives us a headache, but Karen’s book includes tips such as adding the enzymes to melted warm (not hot) chocolate and then freezing. That has worked! We sometimes need to line his food up chocolate button, chocolate button, enzyme chocolate cube, whizzer for example to get him to eat it (a tip passed onto me by one of Archie’s ABA tutors- it works).

 

So where should you buy enzymes? Nuticentre stocks a range, and they’re exclusive UK distributors for Kirkman’s. I’ve always found using Nutricentre to be a bit of a painful experience. I’ve never managed to complete a transaction online, I always get kicked off somewhere around the checkout page, and ordering over the ‘phone always seems to be harder than it should be. Occasionally I’ve been left waiting weeks for items, although the last few transaction (for Nordic Naturals cod liver oil) have been delivered promptly.

My preference would be to use Mandi Mart. Run by David and Mandi Rodwell, parents of an autistic child, they are real experts both in autism and enzymes. Delivery is super speedy (I think mine arrived a day after placing an order). They have a very useful FAQ page. You might want to add them to your favourites!

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cherylsIt’s been a quiet week at aut2Bsafe. Unfortunately not at home (half term!). Getting a break can be essential, yet very difficult when you have a child with autism. Finding someone you trust to look after your child can seem impossible.

 I’ve written before about Direct Payments. They’ve been useful for us, but one problem is then finding someone to provide a service. It was relatively easy to find helpers to come in and give me a hand. It was much harder to find someone we could take Archie to. We felt this was important as having Archie go somewhere would give us the opportunity to take Joseph and Louis out somewhere to take part in ‘normal’ (for want of a better word) activities every now and then.

 Eventually we came across Scamp Camp, run by Cheryl Dummer a childminder in Ivybridge, Devon. She also offers day and overnight respite care to children with special needs, is PECS trained and has a lot of experience with autism. Archie goes to her for occasional Sundays, staying from 10am to 4pm. He loves it. To the point where I don’t tell him he’s going until it’s time to leave or I get badgered all morning. We pay Cheryl with direct payments, which is very easy as she is self employed. Social services were fine with this arrangement.

A similar service is provided by Nick, a male nanny working in Berkshire, Surrey and North Hampshire.  I haven’t used Nick, but I his feedback is good and I know he has a lot of experience with autism.

Finally there is a specialist nanny agency for children with special needs (and their siblings); SNAP Childcare. Again I haven’t used them myself, but I have heard good things.

There will of course be other respite services offered by social services in each area which are probably worth checking out. Talk to your social worker (if you have one!). Unfortunately several services have closed locally recently which means the remaining ones are stretched, and travel may be needed to access them.

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