A couple of weeks ago I went to Naidex which is the yearly disability exhibition. There is always so much to see and do for anyone with any interest in the innovations for the future of independent living.
I go because I like to look at new wheelchairs and accessible cars, but there is also a lot of new technology and information on holidays and disability sports. It can really be an eye opener.
Touchpoints Europe
One of the stands we spent a lot of time on was Touchpoints. I’m not always looking for things for myself, I also have autistic children and Star has physical disabilities too. The Touchpoints attracted me because they claimed to be of benefit to those with Autism.
I held two of the little devices while the lady on the stand talked to me about them. I took some information to look up when I got home, along with a purchase code as I was already thinking about buying some. While there I also filled in a competition form.
I received an e-mail shortly after the exhibition to say that I’d won the competition for a box of Touchpoints basic. This was the day after we’d been to the school to talk about the Little Man. He is now on the school’s Special Educational Needs and Disabilities register, and we know he is autistic although we don’t have it in writing yet.
The Little Man was fascinated with the Touchpoints and was keen to give them a try at school. We talked to the teacher who allowed him to wear the Touchpoints on his wrists.
After just a few days of wearing them he is already much happier at school and getting on with his work. I’ll explain more later.
What Are Touchpoints and What Do They Do?
In the box you get 2 touch points, a duel charger wire(so you can charge them both at the same time) and carrying pouch, a set of wristbands and a sticker sheet. These are the Touchpoint Basics, there are other options to choose from.
To use the Touchpoints you press the button on one to turn it on and then choose between the three settings: blue for sleep, yellow for calm or purple for anger. Then if you turn on the other Touchpoint and face them together the second device should change to match the same colour as the first and begin vibrating in an alternating pattern. Then you keep the Touchpoints on either side of the body. You can use the straps, or put them in your pockets or socks. Anywhere you feel comfortable putting them.
Touchpoints work through Bi-Lateral Alternating Stimulation Tactile (BLAST) technology. This means, in simple terms, that alternating messages are sent to the brain to interrupt it’s current state and keep it more relaxed. I’m trying to keep it non science(y) here, but if you want to understand more it’s explained in detail on the website. Or you can see a scientific study here that shows that it really does have an effect on emotional and physical pain.
Our Review.
The noise made by the Touchpoints was one of the first things I noticed. It was noisy in the exhibition so this wasn’t something I’d noticed until I turned them on at home. However, when put in my pockets of my trousers the noise was considerably less noticeable. I guess if you put them in your socks, or down your bra, then you would notice it even less.
The Little Man wanted to wear them on the wristbands provided. I was worried that they would be too noisy for school, but he pulls down his sleeves over them and no-one notices.
The Little Man is the one who’s had the most use out of them but I did get to use them myself. I’d become upset over an incident which totally stressed me out almost to point of tears. I was in a right ‘flap’ not knowing what to do. The Touchpoints were nearby as they’d not long arrived and I’d been looking at them. So I tried them out. I put them on ‘angry’ as I really was that stressed out, then I popped them in my pockets. Within minutes I felt much calmer and I was able to make two phone calls which helped to sort out my problem. I can honestly say that the Touchpoints really helped to calm me down, and in just a few minutes. I’d have probably been stressing for a lot longer without them.
As I said before, the Little Man has been having problems at school. Nearly every day we were getting notes in his book about him not concentrating, disrupting the class and generally being silly. Then the teacher told us that he annoys the other kids so much that he had no friends and would often spend his break time alone, or annoying others. This really upset me as I know at home he is a sensitive well behaved little boy. He was like Jekyll and Hyde!
With the Autism diagnosis upon us I realised that maybe he was suffering from over stimulation at school which is why he was acting up. I hoped that the Touchpoints would help with that.
So now he wears the Touchpoints to school each day. He found out by reading the website how they work. He chooses what setting to have them on and uses them when he needs too. They have helped him a lot. We have had reports back that he is getting on with his work more and not annoying the other children as much. He has not disrupted the classroom and yesterday he came home from school and told me he had made some new friends!!
Touchpoints have not asked me to write this review although they did ask for some feedback on their Facebook page. I am honestly really thrilled with the Touchpoints. If I can get them off the Little Man for five minutes I might even have another try with them myself. Or, maybe I will buy myself a pair too.
Touchpoints have so many uses as well as stress and Autism. They can help you get to sleep, study, tourettes, negativity, Parkinsons, Social issues, fear of the dark, test anxiety, phobias, aggression and many more. You can find an encyclopedia of uses on Facebook.
Discount Code
When I gave Touchpoints my feedback they told me I could share a discount code with anyone who may be interested in trying Touchpoints for themselves. Here is a copy of the information they sent to me with relevant links and information.
There are two types of TouchPoints available:-
The Basics are manually controlled devices with 3 settings Sleep, Calm and Anger.
The Originals are app controlled devices which come with the 3 settings mentioned for the Basics but additionally with Focus, Performance and Craving. So you should consider what you need the devices for and whether you want to use your phone to control them.
Find out more on the link below:
https://www.touchpointeurope.com/pages/get-started
Once you have decided which version is for you please visit https://www.touchpointeurope.com/pages/shop-touchpoints and use code AUTISM15 at the checkout.
This should give you 15% off.Any other queries drop us an email to info@touchpointeurope.com or call us on 01531 820511, this line is manned between 9am and 3pm on weekdays.
The code Autism15 should be good for the whole of April, which is Autism Awareness Month. You can always call or e-mail for more details.
If you do try them I’d love to know how you get on.
Word of the Week #14 2019
Hello and welcome to the home of Word of the Week, a nice and simple weekly linky, with everyone welcome to pop by and share. You reflect back on the past week and sum it up in one word. Then share your word with us in a blog post, with as little or as much explanation as you like.
There are not too many rules with this linky, just remember to read at least another couple of posts in the link up after adding your link. Do try to stick to the theme of summing your week up. I will read and comment on all posts and tweet them out for you. I also have a Pinterest board devoted to Word of the Week and I will add posts to Mix (formerly Stumble.) Please add the badge below to your post so that others may find us and join in. If you comment or tweet then please use the hashtag #WotW
If you are unfamiliar with the Word of the Week linky then please feel free to ask any questions. New linkers are always welcome, we love to hear what you have been up to in the past week.
My Word of the Week
I’ve kept to my promise that I made to myself about getting out of the house more. I’ve been out three times again this week.
Monday, I was in hospital having my IVIG treatment. I’m there for about three and a half hours, sometimes it goes quickly, sometimes not so. This week I was without an audio book so it went a little slower.
Tuesday, we had to go to the Little Man’s school to speak with the Special Educational Needs and Disabilities (SEND) teacher. It is believed that the Little Man does have some kind of autism and is now on the SEND register and we are waiting for his final diagnosis. It wasn’t really a surprise, but it still brings up all sorts of feelings that are difficult to deal with. (I didn’t sleep very well on Tuesday night.) The Little Man, however, is quite happy.
Wednesday, I went out shopping. It was kind of a spur of the minute thing but I had promised to fetch a game for my eldest son and because my daughter ordered it they had refused to give it to Graham. I went along pretending to be my daughter. We also popped into Iceland for a bit of food shopping.
The rest of the week I’ve spent trying to sort out my blog. I’ve still a way to go to get it how I want but this theme allows for a lot of editing so I should be able to tweak it lots.
So, although there has been a lot of things going on this week, I am choosing the word Autism as my Word of the Week. It seems kind of strange that we found out for sure about the Little Man’s Autism on World Autism Day. It is also Autism Awareness Week (or month) and yesterday I published a post about what Autism means for our family.
So Now it’s over to you, what word or phrase sums up your week?
This is Our Autism
When you’ve met one person with Autism, you’ve met one person with Autism
I can vouch for this, I have three autistic children and they are all very different. As it’s Autism Awareness week I would like to share my stories.
Number One Son
Many years ago I was told that my son was autistic. I had seen the film Rain Man, and that was about as far as my knowledge of autism went.
I went to the library and armed myself with reading material. I researched remedies and hoped there was some cure. Yes, I went down that path! I didn’t want a son with autism, I just wanted my son back.
Then I realised, he was still my son. He hadn’t changed just because he’d been given a diagnosis. Yes, our lives changed, especially where school was concerned, but we carried on and suddenly it didn’t seem so bad. We could do this!
Star
It may or may not come as a surprise but Star’s real name isn’t actually Star. When I started writing this blog she was five years old. I asked what I should call her on my blog and she said Star. So I did, and she has proved to me time and time again what a little star she is.
Star’s autism was picked up much earlier than my eldest son. She was first assessed at the age of three, but not given her diagnosis until she was six. Some girls are able to mask their differences, but Star has always embraced hers and I wouldn’t have it any other way.
Apart from her autism she has had other physical difficulties that we are still trying to get to the bottom of. She has been in for surgery five times, and had to wear a halo vest twice for a total of seven months.
But, although she lost an entire year of school, she is still on par with her peers and attends a mainstream school. She’s about to start choosing her options for her GCSEs and is not fazed at all.
The Little Man
We’ve known for a while that The Little Man has had problems. (Just to clarify, his name is not actually Little Man either.) Right from when he was very small he was different. He didn’t walk or talk until he was nearly two years old. As a baby he liked to lie flat all the time, he hated being sat up. There wasn’t anything wrong with him though, he was just doing it all his way.
He has always had difficulties at school, he gets into trouble for not listening, not concentrating or doing his work.
He has been bullied a lot because he doesn’t know how to interact properly with other children. I’m not saying it was his fault that he was bullied, but young children do tend to pick on kids that do things differently.
This week we have been working with his school on getting him assessed for Autism. He’s already on the school’s Special Education Needs and Disabilities (SEND) register.
The Truth About Autism
Quite simply, autism is different for everyone. My three children are different with similarities. My experiences with all three of them have been different. Other parents of autistic children will have very different experiences too.
Autism Awareness is necessary for people to understand these differences. But most of all, we should understand acceptance. Autistic children and adults just want to live their lives in this world like everyone else, but they may perceive the world differently. A little more understanding and acceptance is all they can ask.
Star is in a very accepting school. The teacher’s understand her needs and although some students might tease her, she has support in place so she doesn’t get upset or overwhelmed by school life. Because she is accepted she is doing really well, she knows what she wants to do after school and I can see she will have a future. It’s not like that for all autistic children, but it should be.
Turning a Corner
I will confess, it has a been a difficult couple of weeks. A difficult month actually, when it just seems that everything that could go wrong has gone wrong in the most drastic way possible.
This morning we were faced with something we really don’t deal with very well in our house, a change of routine! Graham had to get up early and take Ash to the vets for his operation. We tried so hard to change the appointment, but 8am is the only time they take the pets in for ops, so there was no option. The vets is 40 mins away by car which meant that Graham would not be able to take the kids to school.
The girl’s should really be able to walk themselves to school but for two problems, a very busy road and Autism.
The Autism looked like it was winning for a while, it’s a good job I set the alarm early to make way for a 15 minute melt down. But, we still managed to get ready and it was Big sister that saved the day. Not only did she get up early to help them across the busy road, but she also instilled a calm in the house which helped Star recover and actually leave the house on time.
The Little Man had to wait for his Dad to return home to take him to school, it’s just too far away and big sister doesn’t even know how to get there (I don’t even know how to get there!) But being at primary school, a quick phone call to tell them he was going to be late and all was okay.
Turning a Corner!
Maybe this morning is proof that we can function (almost) normally as a family? I guess to some people it sounds rather strange me saying that, but the kids all managed to get into school and no-one was killed on a busy road, so I’d say it was a success.
Ash has already started to wake up from his operation and I’ve been told he’s doing fine. So now we just have to get through the rest of the day.
And while I’m feeling positive I can also report that yesterday went quite well too. Another day of disrupted routine, the girls had an inset day, the eldest son had an appointment that I had to attend with him and it was my birthday. Autism (son and daughter’s) almost took over on two occasions but we got in there quick and stopped it. I had lunch out and a take out for dinner, which was way too much food.
I had presents, lots of presents and cake and beautiful designer cheesecakes, and chocolates.
I had a friend come to visit in the evening and we watched ‘I’m a Celebrity Get me Out of Here’ while making pom poms and catching up.
For the first time in weeks I feel like the bad stuff will go away. We have hard fought for appointments coming up to ease health issues. The stressful things are done and dusted. Now we just have to survive until Christmas.
We can do that can’t we?
Autism – If Only I Knew
I have two, possibly three children with high functioning Autism.
If your child is not developing properly as a young child or baby then your health visitor will generally lead the way to seeing if your child has autism or other special needs. Often, though, autistic children can slip through the net and diagnosis does not happen early. My eldest child was not diagnosed until he was twelve years old. This was partly my fault, because although I knew he was ‘different,’ I did not know anything about Autism and thought he was just an awkward child.
It’s not easy to admit there is something wrong with your child.
This is often the first hurdle, admitting that your child is different, that something is wrong. With my eldest, both myself and his Dad would not accept that his behaviour was anything other than him being naughty, a typical boy. His Dad would say, “he’s just like me when I was a kid.” But he wasn’t. Well, he may have been, but his difficulties lay much deeper, his problems more complex. They appeared more obvious as he became older and he needed help.
With Star, it was different. I accepted that she was having problems just like her older brother, and had thought that maybe she too was autistic. However, I still kept my thoughts to myself until her teacher at school said she thought she might need further intervention and asked us to refer her to a child psychologist. We did, and she was diagnosed at six years old. That’s a whole six years earlier than her brother. And I’m so glad that we did because she has coped so much better with school than her brother did.
Now, we suspect that the Little Man may have issues. Only it’s hard to admit. Is he autistic or not? We have had suspicions and his early years definitely point to it, but his Dad swears he’s just like him when he was a child (Is history repeating itself?) The Little Man is having a difficult time at school and I’ve suggested we get him some help, maybe a talk with a psychologist, see if he is autistic. His Dad thinks we should move him to another school. I do think that a new school may be the answer for now, but not long term. You’d think that this far down the line it would be easier to admit to there being something wrong, but it really isn’t, not ever.
It’s Not Easy to Get a Diagnosis
This is one area that seems to have gone backwards instead of forwards. It is said that there has been a huge rise in autism diagnosis, but because of the rise it is taking longer for the diagnosis to take place.
With my eldest, I know I held off getting him a diagnosis, but once I’d got past that and arranged for him to see a psychologist, the diagnosis came quite quickly. There was an interview with me and him. A little interview with him (which didn’t really happen because he refused to speak to her.) And a report from his school. That was it, a diagnosis of Asperger’s Syndrome.
With Star, again the diagnosis was fairly straight forward. The main difference was that instead of a report from the school, she was observed at school. Her diagnosis was High Functioning Autism.
Now we are still considering whether the Little Man has Autism or his problems are related to something else. The school has raised concerns so we went to the GP who told us he couldn’t refer him. The next step is to ask the school to refer him for assessment, but as I’ve already stated, the school has already told us they can’t and that it’s down to the GP. Already we are being passed from pillar to post without any help and we haven’t even reached the assessment stage.
Why A Diagnosis helps.
I’ve found with both my autistic children that once they get a diagnosis things start to get better. On a basic level it seems easier to accept that their behaviour is so different because they have a diagnosed condition. They still need disciplining like any other child, but deep inside it helps to know that they can’t help it. School life can also become easier. These days a lot of school have a good understanding of the needs of an autistic child.
With my eldest it was more difficult because the school were unhelpful, they had no idea how to cope with a child with autism and their first step was to put him in the special needs unit.
Some autistic children do not have learning difficulties, my children don’t. Putting my son in the special needs unit was the worst thing they could have done and he rebelled, a lot! Eventually, after several meetings with the school I decided my only option was to take him out and teach him at home. This triggered a whole lot of help that I wasn’t offered before.
He had a tutor that would come to our home and teach him one on one. Then he was given a place at a special school for children who couldn’t go to a regular school. This ranged from children with sickness, broken limbs, emotional problems and young pregnant girls. My son fitted in fine. He didn’t have to speak to anyone or make friends which suited him fine, but he did get to learn and eventually do his GCSE’s. It wasn’t problem free, I lost count of the number of times I had to go and collect him and bring him home because he was ‘acting up’ or being unresponsive. But, it worked for us, much better than his previous school. None of this would have been available had he not been given a diagnosis.
I’ve written a lot about my daughter at school. She goes to a mainstream school which is very good with it’s autistic pupils and she is getting along fine.
The Future
The future is the unknown with any child not just autistic ones. But deep in your heart, when your child is autistic you have to accept at some time that the future may not turn out the way you wish it to. If your child is high on the spectrum then you will probably realise that your child will always be with you and the independence you would normally expect your child to achieve someday may never happen.
With a high functioning child, or one low on the spectrum you may have hopes that they will achieve some independence. When my eldest was 19 yrs, he was put forward to a scheme of independent living, where he would have had his own little apartment but still have someone keeping an eye on him. The decision was that he wasn’t suitable for the project. Half of me was relieved, it’s hard to let your child go, but the other half was disappointed that he couldn’t go out into the world and fend for himself (or partially fend for himself at least.)
Star, has ambition, and I do hope that one day she achieves a lot more than we expect. But although I’ll encourage her all the way I will always know that her autism is the hurdle we will have to overcome if she is to achieve independence. I guess, I have learnt my lesson. A little too late.
Check out these Autism Blogs:
http://www.stephstwogirls.co.uk/
http://autisticnotweird.com/awareness/
https://josephamazingspectrumcoat.com/
http://www.autismwithlove.co.uk/
https://faithmummy.wordpress.com/
http://www.rainbowsaretoobeautiful.com/
https://mummyhereandthere.co.uk/