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Last week I went to help at a DIY SOS near Halifax. It was to the house of little boy aged six whose family desperately needed help to make their house more suitable for his needs. When I arrived I had to park quarter of a mile away due to the amount of vehicles, camera crew, Portakabins and chemical loos in the cul-de-sac. As I walked down to the house I kept seeing people that I thought I recognised! Of course these were the stars from the program and I did not know them personally at all! However they were all extremely friendly and sent me into the “Ops Portakabin” to speak to the girl in charge of logistics. The poor girl was fielding telephone calls and people left right and centre. I waited my turn and explained I was here to help assemble the TFH products donated for the show.
I was told to go into the house and up the stairs to the boys bedroom. I don’t think I have ever seen so many people in one house except perhaps at a party however all these people were busy doing things clutching paint brushes, mops, dusters, plants, trowels, screwdrivers and of course a mobile phone. I went up the stairs a fairly typical modern house and turned left into a huge new extension which spanned the width of the house with windows at each end of this lovely new space. One side was his bedroom with a lift that would bring him up in his wheelchair from downstairs. This would mean that his mother would no longer have to carry him upstairs over her shoulder which as he grows and gets heavier was going to damage her back. The other end of the room was a wet room with a huge Jacuzzi style bath, he hates showers . The room was divided with a wall which did not go to the ceiling so that the hoist that ran in a U round the room could be passed over the wall. While I was there his bed was brought into the room. Already photos and pictures were up on the wall and I helped assemble the two bubble columns a laser stars projector and the first ever bouncing chair. They were all extremely easy to assemble however filling the bubble columns with water did mean that we got rather in the way of the plumber finishing off in the wet room. His room looked amazing and a place that any boy would love to call his bedroom. Once we have checked all the equipment worked I was really getting in the way of all the people working so hard making a wheelchair path in the garden, a deck leading off the new extension and all the beautiful planting. So I was sent off to a nearby supermarket car park where there was a BBC catering team restaurant van and very kindly I had a fantastic lunch of fishcakes and vegetables followed by fresh fruit and a cup of tea. The atmosphere in the catering van, the house and the cul-de-sac outside the house was amazing everybody pulling together to change the lives of this little boy’s family.
It is very sad to think that you have to write to the BBC to get a hoist, a lift and a bathroom that a child with special needs can use. I was told by one of the members of the BBC team that the family could not get carers any more as he was getting too heavy to manually lift. Now they have a wheelchair lift and a hoist the family will once again be able to get carers to help look after him. I do appreciate that TFH products are fun and entertaining and not a necessity for family life. But surely if someone needs a hoist to be got from their bed to their wheelchair or in and out of the bath it should not be up to individual companies to provide the products free of charge for a BBC DIY team to put them in.
Having said that I am really looking forward to seeing the program aired on telly and a massive thank you to the DIY SOS team who posed for me to take a photo, they must get that for every challenge and they did it with such good grace and big smiles, I have to say my street cred with my children’s friends has rocketed!
Why is it that beautiful spring weather drives me to tidy areas that I can ignore all winter?
Possibly the fact that I could not get to the lawnmower due to cardboard boxes which on closer inspection were filled with TFH products which had been sent to me for use in a photo shoot last autumn. The box was filled with brightly coloured and attractive toys. The sort of toy that will appeal to most children immediately and of course photogenic too
The toy the top of the box was the small Squish. This has to be one of my all-time favourite toys I bought one for my daughter when she was three months old (in fact I think it was the first toy I got her). We still have it, she is now 14, I have kept it for visiting babies. It is a delightful “ball” of wooden sticks and elastic. it is so incredibly light less than 100g and because of its structure it is very easy to grab hold of or catch anyone with very poor muscle tone can enjoy playing with the squish. There are also some moving wooden beads so there is a very quiet noise as you shake it. Of course because of the elastic you can squish it and it will spring back to its original shape. Because of its attractiveness it appeals to children and adults alike.
The next toy to be pulled out of the box was the Shake Rattle and Roll. This is a clear tube with brightly coloured caps at the end and a contrasting coloured ball inside. As you tip the tube the ball rolls down to the end and makes a very pleasing sound as it bounces off the end caps. The simplicity of the toy is its attractiveness again another light toy only 160g, it is also extremely robust and can survive being dropped or thrown from wheelchair height. A good resource for upper body muscle tone and eye tracking.
Next a set of eight Handbells in a robust cardboard box. These bells are rainbow coloured each one has a white handle with a sticker on the top labelling its note. The red bell is labelled C1, the orange bell D2, the yellow bell E3, the green bell F4, the light blue Bell G5, the dark blue Bell A6, the purple bell B7 and the second red bell C8. I am not musical enough to know if the pitch of each bell is absolutely accurate but I am musical enough to know that each pitch is different and they certainly appear to be going up the scale! They are beautifully attractive and each bell only weighs about 100g. They are much more robust than they look ours has survived many drops from wheelchair trays to the floor. My only criticism of this product is that if the white handle is sucked the sticker will come off.
Then a great toy: the Wacky Ball which was almost impossible to photograph as it moves so quickly however a brilliant icebreaker and it got everybody laughing including the photographer. The ball needs one AA battery you then press the button on the side and the ball rolls around in a bizarre and random manner. Great for getting children to move around and to interact with one another.
There are plenty more toys in the box are but I must move the boxes and mow the lawn before the weather breaks
Last week I had coffee with a friend, I noticed that her milk came in plastic bottles.
She told me that it was milk from Guernsey cows which are “cows of one colour”. Her son is autistic and she has read some research that shows it can help if you drink milk from such cows. I asked if it had made a difference and she said she’d been doing it for a year and he has had a better year.
The more I work with autistic children and adults the more I realise that we are just at the beginning of understanding autism. I believe that the concept of the Autistic Spectrum will develop and be subdivided into many recognisable types of autism and each type is likely to respond to different treatments.
Parents of autistic children are desperate to find something that will help. This means that even the most benign treatments quickly become emotionally disputed and there are numerous doubtful claims which have the potential to do harm.
When I look at my friend’s little boy who is now writing stories, joining in PE and making friends at school, could it be due to the milk? it’s very difficult to tell. My friend feels she is doing something to help him. And Guernsey milk tastes good in coffee.
This week I have been sent the proof of the calendar I have been working on since July. It is always very exciting when you see the end product something you had a small part in. And my part was very small.
The calendar is for the charity Kids. Kids is 40 years old and has produced the calendar as a celebration. Kids is a wonderful charity offering an incredible support to families and children from birth to 25. If you would like more information you can visit them at their website www.kids.org.uk
There were 3 photoshoots in different locations around Wakefield. Each shoot followed a similar format: we arrived, set up the room and the families came to their pre-booked photography slot. The photographer was absolutely amazing, he was able to put the families and their children at ease in what was a rather unusual space. It was my job to make the toys more interesting than the specialist lights and the camera. Some of the children posed like professional models, others needed a little encouragement. We took photos of whole families as well as individuals many were truly beautiful, the families will be delighted with them and it was very difficult picking those that made it into the calendar.
The families were also interviewed as to why Kids was important to them. The responses show what an amazing charity it is.
“You just need to ring them and if they don’t know they find out and ring you back. I don’t know what I would have done without them.”
“They have helped us like a friend, any time I can call and ask for help.”
“They cover everything and we couldn’t have done much without them.”
“Kids is important because it provides helpful advice and support and there is always someone to speak to who understands.”
“Kids is very helpful sorting out appointments, helping with benefits and they do great coffee mornings.”
I came away from the photo shoots humbled at how little these families with their very special children are asking for. Kids is providing them with a key worker who can help them through the myriad of appointments, benefits, and facilities available. One of the key workers explained to me that Hull had been a pilot area for key workers. Some Parents had actually moved to the area so that they could benefit from the key worker system. I know that in the green paper there is talk of each child having a key worker I do hope this is something that the government does put into place nationwide.
The calendar will be available from Kids and TFH in November for £5.00.
The most popular toys that I took were the Bouncing Rocks, UV Cubes, Rainbow Streamers, Rainbow Blocks, and the Lollipop Jungle which the photographer said helped so much that I let him keep!
My eldest daughter has been using a rose pink colour overlay for nearly 6 months now and she says it really does help. I have to say that she does take it everywhere with her, so much so that the colour has rubbed off in areas and the overlay is now rather patchy. Also when she is doing worksheets, copying off the board or sharing music with another child she cannot use her overlay. I felt maybe the time had come to invest in some coloured glasses. So last week I took my daughter to Bradford eye hospital for her final appointment for her coloured glasses. In the previous appointments they had tested her eyes and checked that using a colour overlay does actually increases her speed of reading. It does, in a minute without the overlay she can read 100 words and with the overlay nearly 140.
The test involved her looking down what can only be described as a funnel and they change the colour of the light in the funnel. This time my daughter found a sort of wine purple the best colour. Then was the expensive part of the day when she chose her frames. This took longer than all the assessments and in the end she has chosen a bright blue. When she was told that the frames were making a statement she replied, “I think the purple lenses are doing that.” I wrote a cheque for over £300 and now we wait for four weeks. There will be one more appointment for a final fitting, I do hope she wears them!
That day became even more expensive when I opened the letter from West Yorkshire police today. They informed me that I had been caught speeding while driving in Bradford. So not only have I bought some expensive glasses I now have a speeding fine, three points on my licence and a husband who is constantly reminding me to drive slower! I had been given the opportunity to do a speed awareness course which according to my father-in-law is well worth doing.
I vividly remember when I first heard about the Internet. I was sitting in a friend’s Stoke Newington kitchen drinking a glass of wine, she had on the table a laptop which she said she needed to close down. I asked her what she had been doing and she said, “surfing the Internet”. I asked her what that was and she said it was bit like a library there was no point in just going on it unless you wanted to find out some information. That must’ve been over 15 years ago. I’m not sure that I still agree with her. It is great for finding something out but I seem to spend an awful lot of time playing on it. Watching clips on YouTube and looking things up that I have a little interest in. Last month I was googling “joint attention” and came across this amazing website.
here’s the link www.autismgames.org
I have since spent hours playing on it, be warned if you have an interest in autism you too will spend hours there.
This site has a large number of games and activities for autistic spectrum children. Many of the activities are extremely simple and need very little equipment perhaps a balloon or a straw. Others require jigsaw puzzles, a bean bag or a trampoline and some others seem to require more complicated equipment. However nearly all the activities have a video clip explaining very clearly how to do the activity. There is also progression in the activities. It is one of the best websites for autism that I have come across. I wish I had found this website (if it existed) all those years ago when my own daughter was diagnosed with language delay.
This website has been created by Tahirih Bushey who is a speech and language pathologist and an autism consultant. For 12 years she has specialised in the treatment of children with autism spectrum disorders. She is currently employed by the Scottish rite clinic for language disorders in Duluth, Minnesota. Here she works with young children and their families involving parents and carers in every aspect of intervention. She says it is for these children and their families that she has created her website. She quotes George Bernard Shaw “We don’t stop playing because we grow old; we grow old because we stop playing.” She also says that playing is like breathing and she signs off from her website saying
While Mel is away I thought I’d write a blog for her and about her, cos its funny.
T’s Guinea pig was off its food and Mel took it to the vet.
In the waiting room owners and their animals came and went, until it was her turn next and a cat lay asleep in its cage.
A dog entered the room, barked at the cat, who hissed and the Guniea Pig died.
Now Mel is no vet and neither were the others, but all agreed that it had passed on and furthermore that it was funny (perhaps you had to be there) and the more they all thought about it the funnier it became until tears began to flow.
At which point the vet emerged and called Mel in. And she went. Well what else could she do?
The Vet saw the tears and a dead pet and Mel suddenly felt that she shouldn’t be laughing (which always makes it worse) and the vet did her professional examination – really creating time and space for the sad pronouncement, time and space being hauled in by the gulp-full by my hyperventilating sister.
“I am afraid to tell you…” she began
School is out and six weeks of summer holidays stretch before us. I know most people look back over a year in December or January but I, who was a teacher for years, start my year in September so the summer holidays are when I look back over the year.
It is nearly a year ago that I bought and installed my voice-activated software. At the time I was extremely sceptical of the product because, years ago my darling husband got me a voice activated computer program that was meant to be able to type the words I spoke. He took our new baby daughter out for the day so I could set it up, but two hours later I had not got beyond the third word which I remember was boat. I must have said it 100 times the wretched computer would not /could not recognise my voice. I called my husband home. That was 12 years ago.
Nearly a year ago I was at a meeting at my daughter’s school for parents of children who are in learning support. A mother told me that she had just got a voice activated typing program for her dyslexic husband and it only took a short time to set it up. This meant he could now use a computer. I did some research and ordered one for myself. I asked the sales person if it was mainly brought for dyslexic users and to my surprise she said no. It was many used by people with poor mobility or doctors!
While many products don’t live up to expectations, I have to say in this case it has. I love my voice-activated software and it has completely changed the way I communicate. I now send lengthy e-mails and even enjoy “writing”. For someone who had a genuine fear of putting anything in writing it is quite an achievement. I am very dyslexic and because of my age it was missed at school and college. Spell check is great, but often I get the word so wrong that the poor computer has no idea what I am trying to say.
Last week I was helping my younger daughter with her homework, she was dictating quietly to me and then I was talking to the computer to type up her homework. I know she should have been doing it herself but we were running out of time! Then the phone rang and I told her I would be back later to help. Ten minutes later I walked into the room to find her wearing the headphones and talking to the computer. I told her it wouldn’t work as it was programmed to my voice. However we obviously speak in a very similar way because the computer had understood most of what she said!
My only criticism of the system is that everybody else in the room needs to be quiet while I’m using it. Our computer is in the main living room (so that I can monitor my daughters online), this means no TV if I am typing!
The voice activated software that I bought was Dragon speech recognition software. I’m sure there are others on the market but I have no experience of these. On their web site is a very moving video clip in memory of Stuart Mangan who was paralysed from the neck down who used this software to give him more independence. It makes me realise how lucky I am that I just have a problem with spelling.
While my own attitude was always “who needs to write ‘enormous’ or ‘gigantic’ when ‘big’ will do?” I now ask myself how long do I make my elder dyslexic daughter (who has a stronger Yorkshire accent than me) and my younger daughter, try and use a keyboard to type before I buy them their own Dragon?
I have now been taking F, an autistic four-year-old boy to Riding for the disabled for nearly a year. It is so exciting to see the progress he is making. It is very encouraging that all the hard work his parents and the ABA team have put in is paying off.
I commented to his mother the other week how much more engaged he was with the adults working with him. He was no longer stimming to drown out the adults chatter. He used to do this by singing nursery rhymes. In fact I told his mother that he was positively flirting with the adults. His mother told me the correct term for this is joint attention. His “look at me” and “I’m so clever” body language is engaging with the adults working with him. A year ago he was hardly aware of other people around him.
Every week when we drive to riding I will comment on the things we can see from the car. I will say “I can see a truck” “I can see traffic lights” “I can see a red car” for six months there was no response, recently he has repeated my comment back to me, but this week he said “I can see cows” and there they were.
I also visited him at nursery where he is supported by a member of his ABA team. He was working with a group of children and bricks with numbers and letters on them. Each child was asked to find a particular number and put them in order. He allowed other children to put bricks down and put his number five in the right place. I was amazed, because only weeks ago if I put a puzzle piece in a puzzle he was doing he would have to take out my piece and put it back in himself.
Later it was running races. We have worked hard on “ready steady go” so he was able to join in with the teacher, however he did not realise that he had to run on “go” so he had to follow (with encouragement) the other children running towards the fence. However on the second race he not only joined in, but also ran on the command – with a huge grin on his face.
He certainly seems to get genuine pleasure out of mastering new skills, which is a great pleasure for me. His ABA teacher said the next big task is to get him to engage with his peer group, because they will be his best teachers. When I think back to how he was when I first met him over a year ago – stimming all the time and requiring prompts for most activities – it is almost unbelievable that it is the same little boy. His peers are now much more likely to enjoy interacting with him.
Starting school in September will be a challenge, but that is true for all children. Now at least I feel that he has the ability to enjoy learning the skills he will need to have a real chance to be happy and enjoy school, thanks to ABA.
Thank you Wikipedia…
Joint attention is the process by which one alerts another to a stimulus via nonverbal means, such as gazing or pointing. For example, one person may gaze at another person, and then point to an object, and then return their gaze back to the other person. In this case, the pointing person is “initiating joint attention” by trying to get the other to look at the object. The person who looks to the referenced object is “responding to joint attention.” Joint attention is referred to as a triadic skill, meaning that it involves two people and an object or event outside of the duo. It is well documented that infants display both types of joint attention at nine months of age. Recently it was discovered that infants as young as three months clearly discriminate between triadic and non triadic contexts. Great apes (orangutans, gorillas, chimpanzees, and bonobo) also show some understanding of joint attention. There is a debate in contemporary psychology about the psychological significance of joint attention: the majority of theorists believe that although both humans and the great apes use it as a means to an end, humans alone also use it for purely altruistic communicative purposes, whereas a vocal minority maintain that joint attention is always a means to an end (i.e., that “pure communication” in the infancy period is a myth), and therefore joint attention by apes and humans reflects shared psychological processes.
Several studies have shown that problems with joint attention are associated with developmental processes that are important in the etiology of autism.
I was on holiday last week at Glastonbury, this was the second time I have been and I enjoyed it far more this time. I think that is due to knowing what to expect. Last year I only realised that I had enjoyed it when we were back in the car driving home! This year the family camping was full and we ended up camping in Spring ground, behind the disabled camp site.
Last year I had not been aware of any disabled facilities, the camp site is screened off and officials at the gates check that only those entitled to enter the field did so. I asked the officials what sort of facilities were available and was told that there were wheelchair accessible toilets and showers, plus a flushing toilet that was cleaned more regularly than others at Glastonbury. Also a secure fridge for the storage of medicine, not wine or beer! There are also power points for charging wheelchairs and other medical equipment. From what I could see there was also a lot more space around the tents that another campsites. This meant that the campsite did not get as churned up and is muddy as the more tightly packed sites did. However the rest Glastonbury did get very muddy. And I am sure that getting round in a wheelchair was extremely difficult.
This year I also noticed viewing platforms at the Pyramid, Other, Acoustic, West Holts, John Peel, The Park main stage and Dance East & West Tents. These platforms were just for the use of disabled festival goers plus a friend. Every platform had a team of stewards ready to assist people where needed. As my children were older this year and I was more relaxed I let them go off on their own and our default meeting point at each stage was in front of the viewing platform.
On my return home and I once I had done a few loads of muddy washing I looked at Glastonbury website under disabled info. And there was lots of information for disabled visitors including a whole section for deaf visitors.
If you had not thought of going to Glastonbury, I know it’s not everybody’s idea of a holiday but if you are wheelchair user it is a possibility. My highlight was Elbow, when we all did the reverse Mexican wave and watching it ripple up the crowd at the Pyramid stage, I could not believe how many people were there all joining in, also the fact that the lead singer Guy Garvey was covered in mud like the rest of us. I loved the kids field, my daughter made a mirror, a chicken out of old plastic bags and a wallet out of the text pack, I am sure some of these activities will be done with my Brownie pack or made as Christmas presents for family members!. Other high points were s singing American Pie with Don Mclean, we had been given sheets with the words on but I was able to hand mine to my neighbour as I know all the words! There is something rather special about drinking cold cider in the sunshine at 11 am singing sea shanties with the Fishermen’s Friends, and for that we were almost at the front. I wonder who will headline in 2013?