The Story of our family, and how Autism effects our daily life.
School, services & charities
This is the section of the website, where you will find all the posts about our experiences with SEN schooling. Jack has been at a SEN school where he was permanently excluded, he was then homeschooled for six months, and is now at a specialist school for Autism.
Lily has been at mainstream school, first at Infant School and now at Junior School. Jack has an EHCP, while we are in the process of trying to get one for Lily.
We have had lots of different battles around school, and have far more experience with it than we would like. I will share all our experiences with SEN schooling, and if people get some advice out of them, and find them useful. Then that would be great.
I’ve been busy with my editing the website, doing what I call “proper” blog posts about specific subjects. Plus trying to master Pinterest, so I thought it was about time I did a “family check up”. This blog started with me just talking about how we are all doing, and what we’ve been up to. I’ve learnt a lot about blogging, and writing blog posts since then.
However, I still do just want to do the posts where I’m talking about what’s been going on in our life’s. So let’s have this “family check up”.
We will start with the major one. Jack is back at school full time. It feels really weird, and I don’t know if I am comfortable with it yet. He was really struggling and was desperate to go back, and we are fortunate that he goes to an autism specialist school. He is in a class of only 7 when it’s full, at the moment there are 3 of them attending. Due to this we decided to send him back, and he is much happier. It had to be full time or not at all, otherwise the confusion in routine would be too much for him.
This of course meant Lily wanted to go back to school, though not full time. At the moment she is going on just on a Monday, with the key workers group to do a outside classroom. She really enjoyed going on Monday. and was asleep by 5pm! It felt weird having a quiet house on Monday, in my head I was foo to get lots of stuff done. I ended up just enjoying the quiet time, and did nothing.
Times have been hard
It’s been a difficult few weeks, especially for Lily who is the one really struggling at the moment. We’ve got quite good at reading Jack, and knowing what’s wrong, and how to solve it. Lily is a complete mystery still, and one thing the lockdown has made really clear. Is just how much being autistic affects Lily.
There’s a lot of work coming up to get the understanding of how Lily works, so we can help her the best way we can. Natalie is back working too, so there’s going to be quite a bit of time where it’s just myself and Lily coming up. I’m hoping to be able to spend some time talking to Lily, and hopefully work put some ways to help her. Too give you an idea, whilst talking to her this week. She said things like “you know I don’t understand things” and “I sometimes wish I wasn’t hear”. Which is a frightening thing to hear from an 8 year old.
How am I doing?
Obviously I am stressing about Lily, but getting her to talk is actually a good thing. We now just need to work things out. Other than that I think I’m going a bit stir crazy, I really need to get out more. Even if it’s just for those walks I set in my July goals post, hopefully next Monday I will make more of the day without the kids.
I am pleased with how this blog is going though, which is keeping my spirits up, as well keeping me busy. Though i’m currently having trouble leaving comments on other people’s blog posts. I think Akismet has me marked down as spam, so I’ve emailed them to try and sort it out. It might seem a minor thing, but it has really stressed me out.
I think that will do for this family check up, hopefully in the next one I will be a bit more cheerful. Hope you’re are all doing well, and staying safe, take care.
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 we are into the second week of the kids being at home. Since my last post things haven’t been going quite so well. Jack has delayed processing, understanding delayed processing as part of autism, and how it effects Jack, was something that took us a long time to get our heads around.
To put it in broad terms, an autistic person may experience a delayed response to sensory stimuli. What this means using Jack as an example. When I ask Jack a question, there is usually no response. It’s as if he hasn’t heard the question. I normally ask again, as Jack usually has a TV or some music on. Just in case he didn’t hear. But it is highly likely he did hear the first time.
Echolalia and learned responses
He just needs a lot more time to process what has been said, than you would typically expect from a child. Jack can give immediate responses, but these are what are called learned responses. Which is where his echolalia comes in. Jack can learn a conversation, and repeat it the next time the same situation comes up. But this is like someone on auto pilot. You are not getting his true thoughts and feelings. We have had many “disagreements” with “professionals” who have worked with Jack regarding this.
Getting Jack to express those true thoughts and feelings, hasn’t been an easy process. We are getting there slowly, and Jack is much better for it. Learning ourselves when to use social stories and PECS took time. They are so important and have been vital to Jack’s progress, and his ability to communicate.
As a parent it’s not easy to always remember this. Sometimes you can forget that a simple question like, what do you want for dinner? Is not so simple for an autistic child. Jack has to be given options to choose from, otherwise you just get a blank look and maybe a “don’t know”. Start with options of food he knows, even showing him the options, and he can give you an answer fairly quickly. Even in a situation of high anxiety or meltdown, though it’s likely he will respond with nods of the head rather than words.
Delayed response to situations
This delayed processing as part of autism, also comes into play, with situations that happen. Which is why it comes as no surprise to me, that Jack was fine with the sudden change last week. But this week he is finding it very difficult. His anxiety has gone through the roof, and he’s become tense and argumentative. It’s like it has taken him a week to process what is happening, and everything that has changed.
We are now prepared for this, and a week isn’t actually a long time. In the past Jack has had spikes of behaviours that stemmed from an incident that has happened months before. Which left us and everyone else baffled, until we finally worked it out with Jack. Knowing about the delayed processing, and just how long the delay can be has certainly been a great help. Now when Jack is unhappy, we know to trace back for months to find the solution if necessary.
What’s happening now?
Jack finding things difficult this week, in one sense can be a good thing. It’s only taken a week for him to start to process what’s going on. So we can now work on bringing his anxiety down, and getting him in a happy place.
The one issue with that of course is these are unprecedented times. We don’t have the answers to the questions he wants answering. When can he go back to school? I don’t know. Will respite be back soon? I have no idea. When can we go and see his grandparents and their dog Mack? I don’t have clue. Just like I have no answers for him when he asks about going bowling, or to the cinema.
He is getting frustrated that I don’t have any answers for him, and he’s becoming very argumentative at times. To be honest I’m getting frustrated myself, the last two days have been hard work. There’s no break from it either, no chance to recharge. The outlook isn’t looking good for that break coming any time soon either.
Jack was fairly calm and relaxed Tuesday evening, so hopefully that’s a good sign. When his anxiety has been down he’s been really good. He’s been playing with Lily more than usual, and spending more time out of his room than usual. I guess being at home all the time, staying in your room all day gets a bit dull. One positive of this coronavirus stuff, is we are doing activities together more than we would usually, which is nice.
Free sensory guide
Lastly I would like to point you in the direction of autismspectrumteacher.com where you can currently get a free 12 page guide to “Meeting Sensory Needs” by clicking here.
It is aimed at teachers in the school environment, but having read it there is certainly value in it for parents as well. As we know only to well with Jack, and are beginning to learn with Lily. Meeting a child’s sensory needs is so important. Get that right, and everything else will start to fall into place.
There’s some great information and ideas in the guide, which is the first chapter of an upcoming book. Though it’s based in the classroom, you shouldn’t assume your child’s school is always aware and doing these things. So arm yourself with information to take to them, that’s what we have always done and will continue to do for Jack and Lily.
It’s been a long and stressful week. Mostly around one Question. Will the kids be going to school or not? For some, that question was answered on Wednesday, and at least the situation was clear. We however were in the group of people, where things remained unclear and confusing.
Jack has an EHCP and attends a SEN school, which put him in the group that would still go to school. So that makes thing clear right? Wrong! Two days of mixed messages, uncertainty and confusion coming from all quarters. I thought he was staying in school, then I thought he was going to be staying home from today. Finally this afternoon the decision was made that he would stay going to school.
His whole class are staying in school, and we decided for the sake of his routine he will still go. He’s already shown signs that he’s worried about what’s going on. To pull him out of school now, would escalate that and not be good for him. So unless we need to self isolate, it’s business as usual.
It’s been just as complicated and stress with Lily. First I though, she finishes school on Friday and that’s it. Then because we have a disability social worker, we thought we were expected to send her to school. We tried to get clarification on this, and we had to wait for answers. Basically no one was really sure what we were meant to do.
The answer came back today. Lily is now off school, but we can send her into school if Jack is at home and struggling. For example, if his anxiety was causing him to be excessively violent, causing the home environment to be dangerous. With Jack at least for now still going to school, that’s not an issue.
How’s everyone finding the situation?
I know it’s not just us, and this is a stressful time for everyone. Will the kids be going to school? Has been the question on all parents minds this week. Lily’s school have sent some work home for her, but the question of how to keep her busy, entertained and still learning is the one that now weighs heavy. At least I know art will keep her happy. How is everyone else feeling? How are you going to keep your kids busy? Any ideas are most welcome. Drop them in the comments.
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.
When people are talking about autism, something you are likely to hear a lot about are Special Interests. Lily has a big interest in sports at the moment, she recently passed her next level at swimming lessons which she was really pleased with. We are so proud of her. She hasn’t found swimming easy, but has stuck at it and never wanted to give up. She has shown great determination to achieve this. To see her so pleased with herself is such a great feeling.
She has also been to a couple of different football clubs, which is something she really enjoys doing. It’s funny, because if we play football in the garden, we have to play like it’s a training session. We have to do practise drills, and I get told off if I don’t behave. We currently have a book that we are booking through.
Jacks’s special interests
If you follow me on twitter @DadDoesAutism you might have seen that Jack wants me to do something. He is desperate to do things that can be put on the website. Out of nowhere last night, he decided he wanted me to help him write a “document” on the T Rex.
My immediate thought was that sounds like hard work. Just showing Jack figures on google aren’t going to cut it. He loves to go into real depth on his Special Interests. When it comes to his interests like Pokemon, Secure Contain Protect, Minecraft and dinosaurs. His ability to retain facts is incredible.
Having had the time to think about this request. I think it’s something he’s desperate to do himself, but he doesn’t know how to do it. His writing and typing skills are not at the level required, to do the type of in depth report Jack would want to do. So he needs my help.
He often talks about wanting to be a scientist or researcher or something similar when he grows up. I think it’s important I try and do this with him. He does very basic stuff at school, and I think he’s craving for more of an intellectual challenge. In the comfort of the home is probably the best place to try this. I will talk to him today and see what he wants to do, and go from there.
Jack loves showing off what he does to people. So I expect he will want me to show it on here. Since I said I will make a art gallery for Lily on here. He has been desperate to contribute somehow. Which reminds me I need to crack on with Lily’s Art Gallery, and Jack wants his section to be called Jack’s Documents. This will be where you will be able to find all the posts, about Jack and Lily’s special interests.
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