Keeping your children safe online, is something all parents have to think about these days. We were given a easy to understand online safety social story by Jack’s School. I believe in giving Jack as much freedom as we possibly can. About a year ago we ran into some problems online, with Jack using TikTok.
If you are not aware of TikTok, it is a social video sharing app. Jack discovered it and became obsessed with making videos. He does all sorts of stuff with the videos, adding music, filters and stuff beyond what I know how to do. I personally think it is a great creative outlet for him, and encourage him to work on his videos. Here is an an example of the type of things he does.
The problems came with it being a social media app, meaning you could message people. Something Jack wanted to do. You can turn messages off, which is what we did, but it didn’t take Jack long to figure out how to turn them back on.
The problem with Jack messaging people is his lack of understanding of how the real world works. If someone tells Jack they are his friend, he will believe that without question. That obviously has massive safety implications. Jack also can’t separate reality from fantasy. He would think something he watched in a movie was real life.
We have made some slow progress trying to explain these things to him. He has acknowledged these things when talking to him, but it’s difficult to know if he’s saying things just to shut Mum and Dad up. Jack has learned how to say things, to be able to get what he wants. We had problems explaining this to school at first, but they’ve seen it now. Jack is very clever at getting what he wants.
Jack’s trouble with social interaction
The other problem that Jack has in all walks of life. Is people see this 6 foot tall, well built person and think he is a lot older than he is. Add the fact his understanding levels are less than his age. This leaves a massive gap between what people expect of him and what he can actually do. Although his autistic traits are becoming more profound with age. It is not always obvious to people that Jack is “different”, until he speaks. With new people or someone you bump into out and about. Jack’s anxiety means he can get flustered and mix up his words.
When he talks to people, the conversation can be very one way, unless you know him well. Then you might be able to get a two-way conversation out of him, but only if Jack is willing. So when we found he had been messaging people, what we found was Jack bombarding people with talk about a subject. Often annoying the other person, as he wouldn’t stop.
Easy to understand online safety social story
We talked with school about the issue, and they worked on it at school and provided us with a social story. We now make our own using Twinkl, which is a website I highly recommend. I wanted Jack to still be able to make his videos. It is a great creative outlet for him, and something he really enjoys. But we had to make sure it was in a safe environment, so we went through the social story with him.
We took the step of deleting TikTok from Jacks phone, and made it so he couldn’t sign back into it. Unsurprisingly Jack wasn’t happy about this, but we came up with a solution that Jack has accepted. I have the TikTok app on my phone, and he is allowed to use it as long as we see what he’s made before he posts it. To be honest I enjoy watching the videos anyway. Also the messages have to stay turned off.
He asks to have it back on his own phone every now and then, but that’s not happening yet. It does mean I have to give up my phone when he wants to make videos, but I can live with that.
I know what you let your children do online and with technology is a divisive subject. It is an area where Jack thrives and even excels, in a world where he struggles with so many things. For that reason I encourage him in the area as much as possible, but of course always wanting to keep him as safe as possible. That was one of the reasons why this blog was started, to give him a platform where we can do stuff together. Something he is really excited about, and why we have the Jack’s documents section on the website. It’s important to have fun and be creative, but you always have to stay safe at the same time.
For today’s post, I am stepping aside for Jack & Lily’s Mum. To take you through step by step a homeschooling success with Lily. I mentioned some time ago that after Lily’s chromosome micro deletion diagnosis, we had been tested for it. The results came back that it was passed on from Natalie. Her understanding of the kids has always been amazing, this perhaps explains where it comes from, especially with Lily. As I didn’t write it, I’m quite happily to boast that this post is an amazing insight into homeschooling and communicating with the children. Something I’ve been really struggling with myself.
Step by step homeschooling success
Hi everyone I’m Natalie, Adams partner and mother to our two children Jack and Lily.
Today has been a good day. This afternoon I came downstairs to play with Lily whilst Adam got a few bits done. Lily and I was having a big tickle fight, she absolutely loves tickle fights! This distracted her from wanting daddy too.
Happily chasing her round our living room saying ‘I’m going to get you’ lily happily laughing her head off waiting for me to catch her. She collapsed laughing on the sofa whilst I was tickling her. As Lily was in a good mood I thought it would be a good opportunity to see if she’d do some schoolwork. Now we can’t mention the school part as Lily becomes far too distressed, and anxious at the very thought.
So instead I said “oh look what I’ve found, I wonder if you can put this sentence together” Lily laughing replied happily “oh yes I can” so the “oh no you can’t” game starts. It’s always best to keep Lily’s interest where possible so I always try my best to keep tasks to interests of hers. Before we knew it Lily had completed the worksheet finding it interesting and no pressure of it being schoolwork she was enjoying doing it.
So I turned the page over to Lily’s delight all that she needed to do was copy the sentences putting capital letters at the start and full stops at the end. Lily wizzed through this page, “Mummy this is easy”. Every step of the way I tell Lily how well she’s doing, how proud of her I am and how clever she is. Lily likes praise so doing this throughout encourages Lily to carry on. Of course at the end of each sheet we add a quick tickle fight in and big praise for how amazing she’d done to complete the sheet.
The joy of maths
Still on a high note with the odd tickle in between Lily was happy to carry on still unaware it’s school work. Lily wanted to now do a maths sheet as maths is her favourite. See with maths it’s more black and white than English, her answers are either right or wrong which is more straight forward so she can cope with this.
Lily turns to number lines and with my guidance on how to work the sums out, Lily happily sat next to me smiling away giving me her answers with a little doubt in her voice. So I decided to make out I had no idea on the last 5 sums. I was pretending to act surprised and shocked when she gave me the workings out and answers. Lily really enjoyed teaching mum instead of mum teaching her. Making it a game seemed so much more fun and kept Lily’s interest throughout.
Incorporating an activity Lily loves
Subtraction was next only it was a picture of an elephant with sums in squares. She needed to solve the sum in each square, to be able to then colour the square in with the right colour from the chart of answers above. Lily loving arty projects I knew this was perfect for her. She has no confidence with subtraction and my maths isn’t brilliant. So I showed Lily how to use a number line to help her do the sums.
Throughout this sheet Lily wanted to guess which colour that square was, then do the sums as this kept Lily’s attention. So that’s what we did. We would both guess a colour first then work out her sums to see who was right, making this as fun as possible I’d say ‘oh no I got that one wrong’ she absolutely loved this. Lily took great pleasure in doing these sums so she could colour the elephant in. With her loving art this task is a fantastic way for lily to engage in learning, and be able to combine art together. Lily only saw this as an arty task, and had no idea she was learning along the way.
Then Lily’s meltdown hits hard
Her final sheet was reading comprehension on Honeybees. Lily chose this sheet as she wanted to learn more about wonderful Honeybees.
Lily was fine whilst I read to her the information sheet which contained the answers for the questions on the following page. However Lily’s mood quickly changed, on the first question seeing she needed to write a medium size sentence, and thinking she needed to do this for every question. Lily started becoming distressed and a meltdown started. Crying, upset and anxious Lily kept repeating that ‘it’s too much’ ‘No one likes me’ I can’t do it’ ‘I’m too stupid’.
I sat next to Lily calmly, and spoke quietly as well as calmly to her, holding her by putting one arm round her and gently applied deep pressure by hugging her. I calmly said ‘Lily it’s ok, your very clever, look at all these sheets you’ve done. Wow your so much cleverer than me! Lets take a few minutes, it’s ok.” I was already seeing this as a big homeschooling success, but I wanted to see if we could do this last piece of work.
Controlling the anxiety and sensory overload
At this point I invited Lily to stand up with me and to walk round our living room calmly. I then sat down whilst Lily did 10 big jumps, at this point Lily sat next too me. I calmly mentioned how good the picture of the honeybees was and the interesting fact about their wiggle dance. We were soon both laughing, and having ago at their wiggle dance.
I then calmly said let’s give this question a go. I wonder what we can learn about honeybees, let’s do it word by word. At first Lily started to become upset again crying, but by remaining calmly at her side and just gently reminding her that it’s only one question. Which is about the difference between bumblebees and honeybees. By taking it one word at a time she’s so clever that she could do this. Still crying she reluctantly carried on writing out her answer. At this point Lily started to say she was tired so we finished this question and had a 5 minute break.
To keep Lily interested I started asking what colours are bees? She said black and yellow so I quickly replied with oh wow look your using a black and yellow stripped pencil it looks the same as bees. Lily was excited by this, laughing she said “Bees will think this pencil is another bee mummy and the end is there sting” this encouraged Lily to carry on.
There’s nothing wrong with giving a little help
With Lily struggling to read, I would read the section of text again. Where the answers to each individual question were in. Once I had read the information to her, I would repeat the question. Giving Lily plenty of time to process both what I had just said, and for her to find her answer.
Lily has always needed extra processing time. So by allowing her this extra time I was removing pressure and avoiding the meltdowns that would follow. After a few minutes I would gently guide Lily if she had not given me any answers. Again this would be done in a playful manner “oh Lily I think it’s somewhere on this line, what about you?” At this I was directing Lily towards the answer without giving it to her.
With reading Lily struggles to read text when it’s black text on white paper. She has previously said the letters/numbers move about. Which is common for children and adults alike, that have learning disabilities. So Lily uses a little slip of red see through plastic sheet, that she puts over the text to make this stand out more. Therefore making it easier for her to read. This also makes it clearer for Lily to read and stops the letters/numbers moving about on the page.
How we helped Lily to Read
The sheets we use and that I used as a child, are coloured projector sheets. If you wish to try this with your child,to start with you’ll need the different colour sheets. Then get a piece of text the text being black on a white piece of paper. This could be in a text book, worksheet or something you type up on a Microsoft word account and print out. Sit with your child and have this document with you. Then simply place the text infront of your child and then place the different coloured sheets over the page with the text, on doing each colour sheet individually.
Each time ask your child if they can see as well as read the text easier with the coloured sheet on the page. At the end ask which colour sheet makes it easier for them to read. At this point you may need to place a few sheets back over the text for your child to be able to say fully. Each child is different so may find different colours suit them better than others.
Then going forwards when doing readings or writing tasks with your child use the colour sheet to place over what your child is reading. I would recommend having a few spare colour sheets that your child prefers. We’ve also designed it so it’s cut to the size of a sentence or 2 so Lily doesn’t always need the full sheet, and it helps Lily to identify where she is within the text.
You can buy these in most places, here’s a direct link to amazons website where it’s tends to be the cheapest place to purchase them. Should you wish to try them with your child. https://www.amazon.co.uk/Assorted-Colour-Acetate-Transparent-Plastic/dp/B00Y0VDRZK
Finishing the work
Knowing it would be too much for her to write full sentences, like the worksheet asks. I instead just asked Lily to simply write the answers below the questions to reduce the pressure on her. As Lily worked her way through the questions she’d become a lot happier. Talking freely about things she’d already learnt about honeybees and putting that together with the sheet. One question Lily didn’t require any help with, and she was very proud of herself for this, as she should be. Then the last question came. This was a fascinating fact about honeybees. Lily wanted to say about there wiggle dance, so she copied the text to answer the question, and every so often we’d be laughing as we’d have a go at the wiggle dance.
This completed Lily’s worksheets for today. At the end I could not believe she’d completed 6 worksheets. The whole time I’d made it fun and interesting keeping her mind busy, and not at any point did I mention that it was schoolwork. She was allowed breaks including movement breaks, as Lily is very hyperactive, and struggles with staying still. This was a huge homeschooling success. More importantly Lily was super proud of herself. At no point did I actually think Lily would take part, or that she’d work through her meltdown with me. Then come out the other side happy and excited.
Lily’s reward for doing all these sheets was to play hide and seek with daddy and her baby doll who she hasn’t given a name yet. She was very excited about this and very proud of herself.
We never claim to be super parents, and homeschooling has proved difficult. Today was the most work Lily has done in a day, and we are so proud of her. Do you have any homeschooling success stories? How are you engaging your children in learning? Leave a comment below. The
When they announced the schools were closing, and they sent work home for the kids to do. My first thoughts on lockdown homeschooling were, I don’t see it happening, especially for Jack. Lily has always had to do homework, and reading tasks etc.. so doing some work at home is fairly normal for her.
Jack on the other hand, has never had any homework, ever. When he was at his old school it was an achievement to get him in school, and an even bigger achievement to get him doing work at school. So homework was never even thought about. Now at his current school, Jack is much happier, and seems to enjoy school most of the time, homework has never been on the agenda.
Jack associates different things with different places, and won’t accept them anywhere else. This can be with the most simple of things. A recent example is hash browns. Jack ate hash browns as part of his “brunch” (He basically got up to late to have a breakfast and lunch before being picked up) for the first time. He told us how much he liked them, so we brought some for him to have at home. His reaction was, hash browns are for (name of respite place) not for home, and he was unhappy with us for getting them.
It might seem silly to some people, but it’s the same thing you see with autistic people and routine. The way I see it, whatever makes it so autistic people need their routines, is at work here. Hash browns mean respite. Sundays mean going to Grandma’s, which obviously is an issue at the moment.
So I never expected Jack to take to lockdown homeschooling, and he hasn’t at all. I’ve tried to get him “learning” through things he likes, without ever mentioning school work. But even that is proving difficult, this week he is finding the situation more difficult than ever. I don’t want to force him to do things, apart from the fact it won’t work, it won’t do him any good. At the same time I don’t want him doing nothing for however long this goes on for. It’s a difficult situation that I just don’t have the answer too.
I have some ideas, but this week Jack has not been cooperative with anything I’ve tried. If anyone has good any fun ideas I can try then feel free to let me know. I’m at the stage of trying anything. Today being Sunday, I will just let him chill out, then see if he will do anything tomorrow.
Making more progress with Lily
Lily is more open to doing school work, and has done some worksheets. But the problem then is, she sees that Jack isn’t doing any, and quite rightly from an 8 year olds point of view. Says it’s not fair she is doing school work, while Jack plays on his Xbox. So the worksheets have been put away for now, and I’m trying to do fun learning activities instead. Of Course Lily is always wanting to do arts and crafts, but I’ve needed some other ideas as well.
Whilst clearing out the garage yesterday, we found this old bingo game. Lily was fascinated by it, and couldn’t wait to play it. So there was the days numeracy lesson, with Lily being the bingo caller. Jack didn’t want to join in, but I’m hoping if we set it up with some snacks and some prizes, then he might want to play. Thinking outside the box, and making things fun are what’s important at the moment. I’ve got some ideas but like I said, I’m open to any ideas, feel free to leave some in the comments below.
So the big question of the moment, especially for those of us with autistic children. How are you all dining being at home with the kids? There’s was a lot of worry about the uncertainty of things, but I think most people are at hone now.
Obviously the key workers are still working, and where necessary their children are still going to school. The numbers I’m hearing from people working at schools have dramatically dropped the last 2 days. Although you see the videos of some people being stupid, I think (hope) the majority are taking this seriously.
At home with the kids
We were unsure what to do with Jack, but he is at home as well now. I’m a lot more comfortable and happy with that. So far he’s been ok, obviously the routine from school and his respite are gone. He’s accepted it so far, but there tends to be a delay with things, so we will see over the next week.
I do quite enjoy being at home with the kids, as long as Jack and Lily are getting along. We are lucky to have a decent garden, which I know is t the case for everyone. So we are able to go outside for some fresh air, and the kids can run around. Yesterday we cleaned the guinea pigs out, and put them on the garden for a bit. Something Jack and Lily always enjoy. Them being on the garden, not the cleaning bit, obviously.
They Both seem to be in holiday mode at the moment. Not much of the school work that was sent home has been done yet, but this is a difficult and unforeseen adjustment. So rushing them into spending lots of time doing maths, would probably be counterproductive. We are still trying to work out the best approach, as always it will likely be completely different for each one.
Im not in a rush, work will get done when it gets done. I’m also coming up with some other “fun” learning ideas, that aren’t just sheets of school work. For example, I have some ideas for another Jack’s Documents blog post, that I will talk with Jack about. He will be excited about that, hopefully you will be to.
Obviously Lily will be busy with her Art as usual, but I’m trying to think of some other ideas as well. Any creative ideas are welcome. I’ve got a couple of blog posts to read that look to have some interesting ideas. I will check Pinterest as well, that’s usually good for ideas. Whatever it takes to keep the kids entertained through this.
One last thing, another short YouTube video from Jack. This time of the guinea pigs, with some background music. He was really pleased the last video got some views…44 last time I checked.
It’s been a difficult few days. Lily has had an ear infection, which has involved a lot of crying and not much sleep. Lily has been sleeping in our room, as it’s further away from Jack. It seems to have worked as Jack’s sleep doesn’t seem to have been disturbed.
On Saturday night Jack asked to go to his Grans with Natalie, while I helped Lily get to sleep. He said he wanted Lily to be able to cry without worrying about upsetting him. Bless him, it was such a nice thing to do. Jack is so kind and thoughtful, but in a meltdown situation that all goes out of the window.
For him to think ahead for the good of himself and others, is such a big step that he is starting to do. He’s had his moments over the last few days, he trashed his room once and has got upset a few times. But generally he has coped really well given the circumstances.
Isolation and routine change
Jacks at respite tonight, he definitely needs the break and so do I. I’m worried that the respite will end up stopping soon, or we end up having to self isolate. Which of course means no school, I’m surprised the schools are still open. I don’t think they will be for much longer.
It’s a phrase that is used for many different things, but at the moment it can only mean one thing. Don’t mention the C word. Coronavirus. I’ve refrained from talking about it up to now, as I’ve felt no need to. But as the situation escalated here in the UK, today we had our first issue.
Lily has been complaining about pain in her ear. We rang up the doctor and were told they couldn’t see her, as they can’t offer face to face appointments. Instead we got a phone call from a doctor, who prescribed antibiotics despite not being sure what was wrong with her.
Yet Lily is still supposed to be going to school on Monday. It just seems like madness to me. Nowhere spreads a virus quite like a school. Maybe the situation will change by Monday, we will just have to wait and see.
The panic buying that has been going on, has been a bit ridiculous. But you think about how mad people go at Christmas when the shops are shut for one day. We really shouldn’t be surprised. We went out to get some shopping done today, as it was payday. In three different stores, there’s was no paracetamol, hand sanitiser or hand wash to be seen. One store did have some toilet roll, which appears to be a miracle.
We are fortunate enough to have been able to go out today, and we have some support around us to help us out. That’s not the case for everybody. There are a lot of vulnerable people out there. I wish people had shown a bit more consideration, when buying enough toilet paper to last a year. And don’t even get me started on the fact it’s completely unnecessary for this virus. If diarrhoea was a symptom I’d understand it.
There’s a lot of uncertainty around at the moment, which of course is the last thing autistic people need. Jack especially concerns me. If the schools do get shut, how is he going to handle his routine being changed? The answer is probably badly, he’s already struggling at the moment, so the last thing we need is his routine disrupted. School holidays that we have time to prepare for are problematic enough.
This evening Lily has started to look really poorly. Hopefully it is just an ear infection, and the antibiotics will soon put things right. But the uncertainty caused by not being able to get her seen doesn’t help.
How’s everyone feeling about the Coronavirus? Do you feel prepared for it? Are you worried about how you would cope if there’s a “shutdown”? Or if you caught the virus? Or are you still feeling like it’s a case of, don’t mention the C word? I’d like to here your comments on the situation and how you’ve found things so far. I’m sure I will have plenty more to say over the coming days, weeks maybe even months. It’s going to be a difficult time for everyone, but for those who rely so heavily on routine, this could be the biggest challenge we’ve ever faced.
It’s been a very busy week involving school and health issues for the kids. I’m working on a post about school, but first I wanted to talk about something else. What some people perceive as the “easy life” of carers. I know some carers get very annoyed and angry at people who think like that. Personally I try to just laugh off their ill informed judgment.
I’ll be honest in saying we have been on the brink of breaking point, on more than one occasion with Jack. His sheer size and violent behaviours were the issues for us, but everyone has their own problems. None are “easier” than the other. The demands on parents/carers are massive, and greatly under appreciated by too many.
The care part, is only half the story though. Looking after your child or children is a full time job itself for many. The demand of the physical care is full on. Then with something like autism, the “invisible disabilities” where what the problems are aren’t clear. You have the time and effort to just work out what the problems your child is having. This can sometimes take months and even years of research, discussions, meetings and trial and error of strategies.
A week of appointments
I’m looking forward to tomorrow, as we don’t have any appointments for the first time this week. It’s been a full on week, and it’s left me feeling tired. These appointments, which like with everything vary in nature depending on the child and what their needs are. Are something that if you’ve not experienced it yourself, are difficult to comprehend. Which is why some people fail to realise what is involved with being a carer.
To give people an idea of just how full on things can be, I’ll go through the first four days of this week.
The week that was(Lily)
Monday – Doctors appointment for Lily. With the GP regarding her problems with anxiety, and to get a CAMHS referral. On the surface this looks the simplest task there is, but unlike Jack we are just starting out with Lily, and have feeling like we have no idea where we are or what to do. So the time and effort trying to think up strategies and solutions has been massive.
Tuesday – Lily’s parents evening. Two appointments required, one with her teacher and one with her SENCO. This wasn’t your average turn up and hear how they’ve been doing parents evening. It was arranged to also talk over Lily’s issues and needs at school, which have really escalated quite quickly over the last term.
Putting together a plan to get a EHCP was discussed. Unfortunately Lily’s infant school was terrible, and the head teacher didn’t believe Lily had autism. So no evidence of any needs for Lily were passed over to her junior school, which has been helpful (high levels of sarcasm here).
The school were very honest, and agreed with us that Lily needs an EHCP. That she is struggling in mainstream school, and will eventually need to move to a SEN school. The good news is she is progressing really well with her work. The school have been really good, and provided lots of support despite not having any funding for her. I can’t speak highly enough of them. I don’t think we could find a better mainstream school to go through this process with.
The week that was (Jack)
Wednesday -The focus changed to Jack. It was his Education, Health and Care Plan (EHCP) review. We had to go to Jacks school and the review was with the school Deputy Head, Jack’s teacher and a school psychologist. Including travel it took 5 hours.
If you are unaware of what a EHCP review is like I will give you a brief idea. Big sheets of paper stuck onto a wall with various headings. We all write onto the sheets, things that are working, things that are not working. Then what needs to be worked on going forward, and how we are going to do that. This type of thing is mentally tiring on any subject. But imagine that subject being the health and well being of your child, and you get it wrong it’s them who suffer. Can you imagine that pressure? I felt exhausted Wednesday evening.
Thursday – No time to rest. CAMHS came to do a health pre assessment on Jack. Basically ten questions on different aspects of your child’s health, where you have to decide whether they fit into the category of, no additional needs, Low, Moderate or High. With the exception of challenging behaviour, which has two added categories of severe and priority.
You have to evidence each one, for it to go forward to a review, where we put the case forward to get Jack some health care funding. Although not the only thing, the major area for Jack is challenging behaviour. In order to evidence Jacks needs, we need to keep a log of all Jack’s challenging behaviours. The last thing you want to do after dealing with Jack having a meltdown down, is have to go and write about it straight away. But whatever needs to be done, we will always do.
Myself and Natalie are lucky that we have each other for support and help. I know people who are doing this on there own. Some have more than two kids they need to be carers for. As for this easy life of carers then. Carers should be treated as heroes, not frowned upon like they are in some quarters. We are saving the country money, we are not a burden, and far too often people are doing it with little to no support.
We are fortunate to be receiving good support, but that’s not always the case and more needs to be done to help carers and those they care for. As always I welcome any comments and if anyone wants to share their experiences? That would be great.
One final thing. During the CAMHS visit they said we should write a book as they are amazed with what we’ve done for Jack. We both laughed. They said they were serious, or do a blog or something. I told them about this blog, and they said that was great and asked permission to share this with professions and parents. It blew my mind. I was so incredibly flattered. It made feel the decision to do this was the right one, and that I am doing something that is truly worthwhile.
Click here to go to a Beautifully written piece by an unknown author, that’s fits this so well.
The last day of the school holidays today and it was probably the best day. Jack and Lily have a special visitor come to see them. Normally we go to my parents on a Sunday. But as the car needs work doing on it. They were coming to our house instead, and bringing Mack the dog with them.
Jack and Lily were really excited to have Mack coming. They were also cooperative with that fact we needed to tidy up. Then hoover all the floors for Mack to come in the house. Which helped me out. The house was the best it had looked all week.
Jack even came downstairs to wait for them to arrive. After barely getting him out of his room the past two days. That was good. When they arrived Mack was running all over the place. He’s a very excitable dog, and Jack & Lily find him hilarious. He also likes a lot of fuss. Which Jack and Lily are both more than happy to give him. He also likes to sit and stare at our Guinea Pigs.
We all took Mack out for a walk over to the nearby football/basketball court. Jack and Lily out together is only possible with the extra help at hand. Lily wanted to play football with myself and grandma. Whilst Jack just wanted to hit a tree with sticks. It got them both some fresh air and tired them out. Which was good. Jack found a great big stick that he wanted to bring home. Apparently he will make good use of it tomorrow. I’m not sure I want to know what that means. It’s not very often Jack and Lily have a special visitor, we normally visit them. So they really enjoyed today, which was nice.
Even after my parents and Mack left. Jack stayed downstairs and we all watched Lego Movie 2 together which was really nice. It’s something that is happening less often. As Jack wants to be in his room or watch something Lily finds scary. So you have to really appreciate it when it happens. Sitting through an entire film together. With everything staying calm, and everyone enjoying it. Is a massive deal.
Later on when Lily has gone to her bedroom. Jack had put Netflix on and was watching old episodes of Goosebumps. He’s really got into since watching the film. He’s become fascinated with monsters. So goosebumps is an age appropriate way for him to watch that type of thing.
It’s another thing that he finds fascinating, because I remember it from when I was a kid. He wants to watch some more with me tomorrow. I was thinking of getting him some of the books. Like this anniversary tin I was looking at on amazon. But I don’t actually know what sort of reading level he is at. I just know he can read. I will have to test him. Maybe just get a single book like this one. See what he can do and go from there.
Lily’s had some mixed emotions about school tomorrow. She seems to be torn between wanting to go and not. There’s been some tears and I am expecting tomorrow morning to be difficult. But we will see how it goes.
I was woken this morning by the sound of Lily crying. When I went into her, she was hiding beneath her blanket sobbing away. I asked her what was the matter? She replied “I don’t want to go to school” I told her it was the school holidays. So she came out from the blanket and cheered up. It’s fair to say I am really worried about Lily.
Next Monday I am expecting this to be repeated. I don’t know what I can do to stop it either. Myself and Natalie have been talking over the school situation. We really don’t know what to do about it. Anyone who can help? It would be appreciated. Feel free to leave a comment or contact us directly through the email.
We had arranged for Lily to go to her cousins house. The one she saw yesterday. When I reminded her about that, she really cheered up. My brother came to pick her up and she went happily. After about 10 cuddles. Lily really doesn’t like leaving us. But she will, all be it slightly reluctantly if she’s going somewhere she likes.
An afternoon with Jack
That left me with just Jack for the afternoon. As he goes out with carers on Mondays. We just stayed at home. He wanted me to watch some episodes of Pokemon with him. Whilst also building some Lego. He got so many sets for Christmas and his birthday. I don’t think even half of them are built yet. This Lego Ninjago set is the one we are building currently. (Affiliate link)
Jack seemed to enjoy the fact I was doing his Lego for him. So he started playing on his Switch and left me to it. It wasn’t finished by the time he went out. So we agreed to finish it tomorrow.
I picked Lily up from her cousins. She had a really nice time, which was great. She didn’t want to come home, and got upset when it was time to leave. So we arranged for her to see him again tomorrow. It’s good that we were able to do that. But it’s another moment where I am really worried about Lily. She has always not liked leaving places. But she got really upset.
It feels like she is crying for help. But I don’t know how to help her. What do I do? It’s going to take a lot of thinking and guess work. To try and uncover what she needs. But we will get there. Just like we have done with Jack in the past.
Today I’ve decided to share what I like to call, our Special School Horror Story. It’s horrible outside and not much is happening, Jack and Lily have barely been out of their bedrooms. Lily does this sometimes but not to often, for Jack though this is a fairly normal Saturday.
Every Saturday he says he’s tired, and to be fair he normally looks it. So he wants to stay in his room most of the day. We used to try to encourage him to come out, but that only caused problems as it would irritate him.
After thinking about it. The school week takes a lot out of Jack. It does for all children but with all the extra things a child like Jack has to cope with it must take an ever bigger toll. We almost take for granted now, that Jack will go to school 5 days a week, and he will travel in his taxi with no issues.There was a time this wasn’t the case at all.
Special school horror story
Before Jack found his way to his current school. It was a very different story. One I like to call our Special School Horror Story. I’ve mentioned it a few times, and I will go back and tell you the story in more detail. It’s not a particularly nice story, but at least you know it has a happy ending. As Jack is on a much better place now.
Jack was diagnosed with Autism at a young age. He was only 18 months old, but when it came round to choosing a school. We really didn’t know what to do, originally we were just going to send him to a mainstream school, due to advice we were given by the professionals, that we were seeing at the time. Advice we now realise was terrible, and that is putting it mildly.
It is only because we moved out of the city and into the County Council area where we live. Which meant all the professionals we saw changed, that it quickly became clear that Jack was not suitable for mainstream school. But it was to late for starting in September, so we had to delay him starting school.
The best specialist school for autism in our entire county, is literally on our doorstep. But we were told it’s almost impossible to get a place. They were right. We looked at other schools in the area, and in the end Jack got a place at our second choice, which we were happy with as it seemed a good school.
Jack Starts School
He started in January and that first half a year went well, and we thought we had made the right choice. How wrong we were.
The second year started ok too, but then the problems started. Jack was at a general special needs school, not an autism specific one. So there were children of varying conditions. One of Jack’s biggest problems is loud noises. He is hypersensitive to sound, he also doesn’t understand that if he does something once. It doesn’t mean he can do it all the time.
So of course they put him in a class with children who’s conditions meant they made a lot of loud noises. Then they had him take a toy in for show & tell, which meant he then wanted to take a toy everyday, which he wasn’t allowed too, but couldn’t understand why. It caused problems with Jack’s behaviour. As he was still a small child the school appeared to be dealing with it. I will state here that because of what comes later, I do not trust any thing this school ever said.
The troubles really begin
Year 3 at school started off ok. We now know that it takes Jack time to settle in, before he starts display his behaviours. He needs time to get comfortable with his surrounding. Then he will push back and test the boundaries, hitting and kicking and pulling your hair, throwing things around and spitting is what we’re reported back to us.
It’s like he needs to get comfortable with a situation or person, before the real Jack comes out. Which is why when people meet him for the first time, they think he is lovely. Which he is when he is calm, and they find it hard to believe the story’s you tell them, regarding what his behaviour can be like. We’ve had support workers ask us if the reports they get on a child’s behaviour are right, after having a couple of sessions with him. Especially more recently when he has calmed down a lot. We have to keep all safe guarding in, because Jack is so big and strong, if something does trigger a meltdown, it becomes dangerous for everybody.
Travel to school
Jack started off going to school on a mini bus, where there were 14 kids on the bus, and he really struggled with it. In the end the transport broke down. He was continuously refusing to get on the bus, and if he did get on, often it would be too much. He’d get aggressive with the passenger assistants, and then refuse to get on the bus at home time. So in the end we took him to school ourselves.
Again there was noisy children in the class, and the behaviour started again. For the last term of the year, as his teacher was pregnant. The school moved Jack out of the class on safety grounds. He was moved to a class where the kids were older, more advanced and no one who was continuously noisy. Apart from the odd moment he had a good last term, and we thought it showed an obvious solution to Jack’s problems at school.
The special school horror story really starts
We were told that for year 4 at school, he would stay in that classroom. Well it was the same classroom. The same teacher, but not the same children. Considering by this point it was agreed by pretty much everyone, that the noise of classmates was the biggest issue Jack was having in school. When we saw the children that were in his class, we couldn’t believe it. It was like they had rounded up all the noisiest kids they could find.
Shock, horror. It wasn’t belong before the behaviour started again. Only now Jack was getting bigger, so the staff were getting hurt. We started getting the phone calls. The calls that he needs to come home, because he’s smashing things up, or refusing to do anything. This then resulted in Jack not wanting to go to school, and thinking he didn’t need to go. The school started not very subtly suggesting, that Jack might be better at another school.
The battle to get Jack to school
The battle every day just to get him to school was unreal. I only did it on Mondays due to work. The physical and mental strain it took is difficult to explain. If you’ve not experienced it, it basically feels like you are in a fight. You are being hit, but you can’t hit back. You just have to try and calm him down.
It’s difficult to do when Jacks at the point of punching straight through glass panels. Yes he has done that, and some how he was only left with a scratch on his knuckles. Strangely enough it was around this time. That the services involved started listening to our pleas for help….
Anyway these battles to get Jack to school, would take 1-2 hours most days. Then he’d be there an hour or 2 and they would ring for us to take him home.
Realising something isn’t right
They started to put him in a small library, that was connected to the class room. So he would be in a quiet room, and he could integrate with the class on his own terms. Apparently when no one was looking, he climbed out of a window. Which happened to be outside the security fence that surrounded the school. Great design!
It was only when the head teacher saw him running around the car park, with a big stick hitting all the cars that anyone noticed he’d gone missing. Which obviously left us with a lot of questions. How long was he being left in a room on his own. It just didn’t sit right, but the school weren’t forthcoming with any answers.
Then one day we came to pick him up from school, and we found him outside on a small playground on his own. It was the middle of winter, it was a cold day and he didn’t even have a coat on. School told us they called us because Jack had been kicking a glass window and it had cracked. That’s what the thought anyway, they didn’t actually know how it happened when we asked them.
So our first question was, How long have they been just putting him outside? Out of the way, so they didn’t have to deal with him. There was no way we were going to have Jack go to a school, thattreated him like this. We know more than anyone how hard it can be to deal with Jack, but never have we just thrown him outside on his own.
The school claimed they only did it as a last resort, for the safety of the children. In his time at school Jack never hurt another child. Claiming the only option was to leave a distressed autistic child unsupervised was not good enough.
Deciding it was time to find a new school
We told the school that we were looking to change schools. Honestly, they seemed relieved. The sly comments and suggestion they might have to exclude him, had been going on for well over a year. The plan was to try and see through to the end of the school year, as we were in the final term. School would sort things out to just keep Jack happy until the end of the year. They sent him over to the sixth form building, with the sixth form age kids. Who were all calmer and more mature, they supported Jack and he had a great time. That lasted for one day, and they put him back in his old class.
We were looking at just pulling Jack out of the school. Looking into who we would need to notify etc… but it wouldn’t matter I got a phone call whilst at work. It was the school wanting me to come and pick Jack up. When I got there I could hear him before I saw him.
He was out on the play ground again. He was growling and kicking everything. Normally when we came to pick him up, he was happy to go home. This time it took a while to get him to calm down enough to take him. Then it was only when he was alone with me that he properly calmed down, which really had my mind wondering what had gone on.
Jack gets excluded
We didn’t have to worry about him going back, we were informed he was being permanently excluded for kicking a teaching assistant on the shin. Now I’m not saying it’s ok to go around kicking people, but this was a special school, where many children, not just Jack would lash out at times. To me it was a weak excuse to get him out quickly, as they knew that’s what we wanted anyway.
I’d even go as far as to say it was planned. They put him back in a situation they knew he wasn’t coping with. Then at the first opportunity he was excluded. This happened just after school were told, that they would get extra funding for Jack. Including a porta cabin class room just for him. It was clear they didn’t want that to happen, but at least it was an end to our special school horror story.
Jack at home
For the next 3 of months we had Jack at home, whilst trying to find him a new school to go to. Whilst also being expected to home school him, eventually we had a home tutor come out 3 times a week who was very good with Jack and did a great job teaching him. We went to pretty much every special school in the county, and not one could meet Jacks needs. We’d heard this before when making enquires over the past couple of year, which was part of the reason we weren’t quick to pull Jack out of school. Finally we found a school in another county a 45-60 minute drive away.
Reflecting on the situation
Not everyone at the school we’re to blame. The staff tried their best in difficult circumstances. The family liaison officer was very good, and continued to help us find a school after Jack was excluded. Going to view schools with Natalie whilst I would be at work or with Jack.
But the Head Teacher I have no good words for, and I will leave it at that. I’m sure you’ve noticed I haven’t mentioned the school by name. Since Jack has left we have discovered a few things.
Hearing of other children’s problems
When parents asked where Jack had gone. The school told them we had chosen to move him to another school. We got word to people what actually happened, and the news soon spread. Next thing we knew, we were being told stories from other parents of the same things happening to their children. That had happened to Jack. I know that at least 2 kids are looking to be moved school.
The Head Teacher doesn’t like any of these stories being talked about. Not even in private WhatsApp groups, and has made threats to people of legal action. So I won’t be naming any name, but if anybody is looking at sending their child to a special school in the Amber Valley area. And would like some advice, feel free to message me. You can use the contact page on here, or find me on Facebook, or twitter @DadDoesAutism