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Can there possibly be anything in this?
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.
Pair Sticks
Why do teachers ask children to get into pairs?
My daughter came back from school this week in tears, she cannot understand why it is always her that the teacher has to put into a pair. Getting into pairs is great fun if you are in a group with your best friend – however is it always a good idea to always be working with the same friend? My daughter is not socially mature enough to be able to anticipate when the teacher might ask her to get into a pair. Other more socially mature children make sure they are standing next to a friend or have even pre-arranged it before the lesson.
In my Brownie group if the girls need to work in pairs I will ask them to pick a partner that does not go to their school, or is of a different age, or is of a very different height. I appreciate that teachers do not have those differences. When I mentioned to a friend who is a secondary school teacher that my daughter was struggling with this, she was surprised that teachers still asked children to find a pair. She said that in her lessons she deliberately picks the pairs for the children or uses her pair sticks.
When I asked what ore those? She said they are lolly sticks with numbers on them, each student takes a stick and partners the other student with the same number. Oh I wish all teachers were as kind as my friend. I have immediately made my own pair sticks for Brownies, dare I make a set of other teachers at my daughters school?
I have decided that I can’t but I will mention it at the next parents evening. However I can try to give my daughter some coping strategies. I have explained to her that other children will have pre-arranged their partner. When I told her this she looked utterly surprised, but I do think that she has taken it on board and let’s hope there are no tears tonight.
Happy Birthday kids.org.uk
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!
An expensive day
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.
the Great lake.
Wow what a fabulous day I have just had.
It was beautifully sunny, one of those perfect was days when you don’t need a coat and you’re not worried about sunburn. I taking out the four-year-old autistic boy I work with.
We went to a park which has a large lake which we set out to walk round. He ran ahead of me and when he was about 50m ahead I would shout “stop” and hold up my hand. As long as I kept repeating “stop” and holding my hand up he remained still. When I got nearer we would say “ready steady go” and then we would run on around the lake, laughing. He is a faster runner than me.
About three quarters of the way round he got tired and climbed into the buggy and let me push him at a more sedate pace for the remainder of our circuit looking at the ducks, fishermen, dogs and their walkers.
As we neared the end we could hear a lot of happy shrieking noises and we could see teenage children trying to stay upright on a raft they had built. Of course they all fell in with more screams and happy laughter. There was even a dog in a buoyancy aid running up and down the bank. It really was one of those perfect days.
Then the icing on the cake: We went into the clubhouse because I wanted to ask if my teenage children could join in the fun, I picked up a leaflet and we are about to leave when the little boy jumped out of the buggy and started to open a door. I said “no! We going to the car” and he said “I need a wee” I looked at the door and sure enough it had the symbol of the ladies toilet. Wow. In we went and after checking all the toilets he chose one, undressed and he did need a wee. I don’t know why he likes to remove all his clothes when he does a wee, but he happily puts them back on again with a little help when he’s finished.
Here he demonstrated appropriate use of language, unprompted. I am so proud of him. It really was a perfect day.
When I think how hard his parents and ABA teacher’s have worked with him not only potty training (which he only really mastered six weeks ago), but speech and appropriate behaviour it is incredible. There is still a long way to go, but days like this make you realise that all the hard work, tears and frustration are worth it.
Pokemon Club
Last Friday I went along to a Pokémon club that was being run in a local community Hall. Elaine who I met many years ago through the NCT has recently started this Pokémon club. Her elder son who is on the autistic spectrum enjoys playing Pokémon and she had found a Pokémon club on the outskirts of Leeds. She regularly took her son to this club which he enjoyed both playing Pokémon and meeting other like-minded children who shared his hobby. However because it was such a distance it was difficult for these friendships to last outside the meeting so she decided to set up her own club more locally. Her club has been running since July on Friday evenings.
The evening I went along there were eight boys ranging from about 7 to 15 playing a Pokémon game on their DSes. There was lots of chat both from the children playing and the parents sitting at one end drinking cups of tea and coffee. It was a lovely atmosphere and the children moved happily around the room interacting with each other. The club is running through the school holidays as she feels it is important to have some continuity. Some sessions have had over 20 children attending and she is confident that come September when people are back from their holidays the numbers will rise again. She said it was lovely to see children returning week after week. The first time they came they may not have been confident enough to join in and spent most of the time sitting with their parent but by the second or third time they would walk in confidently and sit down at a table to play with other Pokémon fans. This club is not exclusively for children on the autistic spectrum but for anybody who enjoys Pokémon.
It was not a game that my daughters ever got into. I think it appeals more to boys, but what I felt was so positive was that all the children whether they are on the autistic spectrum or not were enjoying each other’s company and talking and playing Pokémon.
I was amazed to find that one of the boys there had travelled nearly an hour to get to this club, but I’m not surprised that once you have been to the club that you return. The atmosphere was lovely, it was so welcoming, friendly, calm yet fun. Perhaps I can persuade my girls to take up Pokémon.
Here’s the link to the club www.harrogatepokemon.co.uk
In Defence of the Internet
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
Happy Playing.
Funny Story – true
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
When to Train your Dragon
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?
Another Year
It’s unbelievable, my youngest daughter is about to leave primary school. It just can’t be seven years ago that I took her to nursery, a child that had only just learned how to speak and would only talk to her family and one other child. We were still using Makaton sign language with speech when she started nursery and if my memory is correct by the time she left nursery she was still only speaking to the same child but now she also spoke to the teachers. Is it the same child who had a speaking part in her year six play? And she has done very well in the government SATs tests including getting a level 5 in speaking and listening!
To this day I have no idea why she did not speak. It was extraordinary. She had one word which was “mummy”, by which she meant “help”. She got by with one word and her fists. She was lucky enough to get speech therapy and we went back through the animal sounds teaching her to listen – which she was very good at. Asked to point at an object she could, asked to fetch something she could. She was able follow instructions and had a good understanding of language, but she just would not/could not use it.
After weeks of trying to get her to make animal sounds we realised that she still was not making the animal sounds but that she had made up signs for each of the animals. A dog, she would stick out her tongue. A duck, she would make a beak with her hand, and for a snake she would wiggle her arm. When I told the speech therapist this she suggested that we had a go at Makaton. Again I was lucky and very quickly went on a course run at my local hospital. Makaton was fantastic, suddenly she started to talk, single words at first and then she said her first sentence when she was 3 1/2 which was “no shoes now “. That sentence has such a symbolic emotion for me, I love saying it. Whenever I take my shoes off I whisper quietly to myself “no shoes now”. My daughter will still use fists over words if she’s tired or angry and we have to work hard endlessly saying “words not fists” however luckily she does seem to save her fists for her family.
I know that the move to secondary school will be huge for her, at primary school she has been protected by children who have known her since she was three. However my experience of secondary school is extremely positive and I’m excited for her.
My elder daughter, who is very dyslexic, will also have a large change next year. For the first two years of secondary school she has been privileged to be taught in a very small English group of just 10 children. At her school this is called learning support. This small group has been taught by the same teacher for two years and it has increased my daughter’s confidence and ability enormously. I am not sure what will happen next year and whether or not we will need to find her extra support. I believe that my daughter’s improvement in all subjects this year is partly due to the fact that the school was brave enough to let her drop French, her second language. This meant that she had three extra lessons during the week to catch up any work she had not got in her lessons and was able to do much of her homework during the school day. I do think it is extremely brave of the school to go against the government requirements and I am extremely grateful to her school for allowing her to have a different timetable from all the other children in year eight.
I know that both my girls and I are looking forward to the summer holidays, roll on Friday.