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.
It must be the half term holidays! Yesterday Jack stayed in his room until 7pm. Then he came downstairs and wanted me to watch Pokemon with him. I let him watch 3 episodes, thn he had to go to bed.
Today when he got up. He was very edgy and argumentative. Yes it definitely must be the half term holidays. Even just the change of 1 week is enough. It’s a pretty common thing with autistic children. They don’t like a change in routine as a general rule.
Trip to my parents
Today we went to my parents for dinner. Like we do most Sunday’s. We go the route every time. If we to go a different route it would set Jack off immediately. Just one different turn and he wants to know where we are going.
When we got to my parents. My brother, his wife and my nephew were there. They also had their dog with them. So two dogs to fuss over makes Jack extra happy. The extra people being there that he’s not expecting. Always effect Jack to some degree. His right led was visibly shaking a lot.
But he was all about the dogs as usual. Then started to talk to everyone in typical Jack fashion. At some point I should document a conversation with Jack. If you’ve never talked to him. It’s hard to explain what it’s like. He did really well though. At one point he went and sat between his auntie and uncle. With their dog sat on his lap.
It wasn’t so long that Jack would have refused to go in the house. I would have had to go around the back, and sit with him in the conservatory. It was mostly because of his cousin. Who he was worried might cry. But now he has got older. Jack isn’t worried about that anymore.
Lily absolutely loves playing with her cousin. So she had a great time while he was there. They roped grandma into playing hide and seek. Which she really enjoyed.
Yes it must be the half term holidays
So after a argumentative start to the day. It actually went really well. Hopefully it will continue that way. It will need lots of reassurance for Jack. Plus stimulating his sensory issues, and keeping him busy. But also not making him over tired. Otherwise that causes problems. For Lily, it’s a case of keeping her entertained. But she is still complaining of headaches . Which is worrying me.
But yes, it must be the half term holidays. No rest for 9 straight days. Time to brace yourself autism parents.
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
Today’s post is about Our Autistic Valentine’s Day, a cute story is Lily and her “boyfriend” at school. It’s the last day of school before the half term holidays, and Jack mentioned his Nintendo Switch this morning, but he went quite happily without it. Which after the problems we’ve had this week that I highlighted in my last post. It was a major success, so it has been a good end to the week. Lily is off school again, but she just wanted to play computer games today. So I took the time to have a sort out around the computer desk.
Our dining room is supposed to also be the office, with Natalie working from home as well. It needs to be a functional working space, whilst also being usable for meal times. Currently it’s fit for neither, and resembles a bomb site more than anything else. But at least I’ve made a start on it.
Autistic Valentine’s Day
Today of course is Valentine’s Day. Lily despite only being 8 has a boyfriend. As much as I say aren’t you just friends, they won’t have it. He came round to see Lily before school, with his mum and dad, to give her a card and chocolate rose. Lily had a card and had baked a heart shaped cake for him.
It was lovely to see. It scored epic levels on the cute-o-meter, and it really cheered her up. Which was great after how poorly she has been. Last year Jack got a bit upset that Lily got a card and he didn’t. At his old school there were lots of girls, and at least 2 that he was good friends with. At his current school his class are all boys, from the few times I have been there I don’t remember seeing to many girls at all. So the opportunity for giving and receiving a Valentine’s card are pretty much non existent.
Jack certainly hasn’t mentioned any that he has got to know. Jack has already completed puberty. It came very early, we think possibly because of medication he has taken. It is no secret that he is very interested in girls. He did go through a stage of wanting to talk to every girl that walked past the house. That seems to have called down a bit now, but when we are out he is always looking at the girls he sees.
Due to his size, he is looking at girls that are a lot older than him, and to be honest I’ve seen them looking at him too. As he is still so young in his ways, and his communication skills aren’t great. When he tries to talk to people when we are out, people have a difficult time understanding him.
He has told us that he wants a wife and kids when he is older. As with everything, we tell him everything is possible. At this stage in his life we don’t want to be telling him he can’t do things, but this is one of those things. That in the back of my mind I wonder if there is any possibility at all.
It’s hard to see right now. And would take some major behavioural changes for it to become even a possibility. If you google, can autistic people…one of the first answers that comes up is, love. There was a time when it seemed the assumption was that they could not. Jack and Lily clearly can, and I think everyone does. They might not be able to have a loving relationship in the the conventional sense. Which some autistic people are unable to do, but they certainly will show love in their own ways.
For now Lily has made Jack a card to cheer him up, and he will also have a card from a secret admirer for him…
We have had lots of issues, with Jack wanting to take his Nintendo Switch to school. He uses devices as a way of controlling his sensory processing and modulation. His school have done us a social story, to help us explain to him why he can’t take it. And also so he can’t try on, the school say I can take it routine. Which he does all the time.
We went through it with him the night before, so he was ready for the morning. I still expecting him to want to take it, but no. I was all ready for battle, but Jack didn’t even mention the switch once. Then when it was time to go. Much to my amazement he just walked out of the door with a smile on his face.
It’s not uncommon for Jack to wait to the last second, before deciding he wants to take something with him. Because of this I stay prepared until he’s gone out the door. Once I shut the door behind him I felt a bit lost. I was so keyed up and ready for battle, that when it went so smoothly I didn’t know what to do with myself. Social stories are great things, but for it to work in this situation so well on the first day. It was unexpected, but I’m delighted that it did.
Operation Punch bag
Jack got a punch bag for his birthday, it took some time to set up as you have to fill the base with sand. The holes to put the sand in are ridiculously small. Lily always likes to volunteer to help, and as she’s off school at the moment I got her involved. Right now I’m not sure if we are even half way there, but we’ve taken a break. It had become painstakingly dull and I was starting to ache. I will carry on with it later.
The reason for the punch bag, is when Jack is getting annoyed, angry or has a full on meltdown. He hits and throws what ever he can get his hands on. If I’m around it’s usually me, me or aimed at me. So we are trying to find ways for Jack to let out his frustration in a safer manner.
Controlling sensory processing and modulation
As I’ve said before, things have got much better with Jack’s behaviour. A big part of that, and a big part of continuing to improve it. Is finding strategies to control his anxiety. His sensory modulation and processing needs, are where a lot of the issues come from. When Jack has a meltdown, he doesn’t want to hurt anyone. He is normally “seeking”, what I mean by this is he is after sensory input.
Jack is diagnosed with both Sensory Processing Disorder and Sensory Modulation Disorder. What does this mean? Sensoryprocessing refers to the way the nervous system receives messages from the senses and turns them into responses. For those with SensoryProcessing Disorder, sensory information goes into the brain but does not get organized into appropriate responses.
Sensorymodulation is the ability to respond appropriately to sensory information and remain at an appropriate level of alertness for daily activities. For Jack this manifests in being over sensitive to things, especially high pitched noises. He is unable to regulate himself, so he seeks for you to do it for him. We are working on him recognising when he needs help to regulate, so we can help him before he’s at the point of hitting things.
It’s a work in progress, but we have made some headway. When he is seeking we use deep pressure to help him, lots of squeezes and also letting him push into is while we push back. Controlling sensory processing and modulation, isn’t easy, and takes a lot of thought and planning. You need to always be aware, especially if the person you are caring for can’t communicate to you spoken words. They will likely be communicating in other ways, you just need to learn those ways.
Trying to plan ahead to avoid meltdowns
Trying to direct him to a punch bag, when he is in meltdown probably isn’t going to happen. Instead the plan that was discussed as the last multi agency meeting we had. Is to try and get a sort of routine together, that gets Jack the sensory input that he needs throughout the day. To hopefully avoid him getting frustrated and angry so quickly.
I plan to draw a routine up. I’m not sure I want it to be set in stone. Do this at 4, do this at 5 etc.. Unless it turns out that’s how Jack needs it to be, but a case of having set things that we do throughout the day. Anyone with any experience with this, any advice would be gratefully recieved.
So we are looking to keep him doing little walks, some stretching and maybe even yoga. He does yoga at school sometimes, and really likes it. Finally use the punch bag to help get some of that sensory input he needs, but also a fun form of exercise for him as well.
Do you know of or use anything to help with any sensory processing issues? I would love to hear about them, we are always looking for new ideas to help both Jack and Lily.
Today’s topic is anxiety or allergy? First though we managed to get Jack to school without his Nintendo Switch again. Though it was more difficult today as expected. He was more argumentative than yesterday. Because we purposefully didn’t charge it last night. We told him it needs to stay at home. To be charged.
He normally reply’s with he can charge it at school. But before he could. I added that his parcel won’t come if he doesn’t go to school. He got an amazon voucher for his birthday. He ordered a Harry Potter Lego set. (Affiliate link)He’s excited for the Lego. Especially as it comes with a Voldemort. But he’s also excited to be getting a parcel. He has always got excited by receiving mail addressed to himself.
Anyway, the double tactic work. He begrudgingly went out the door in a bad mood. What I find funny though. Is when his transport assistant says good morning. He cheerfully replies back with a big smile. Obviously it’s only me who is the bad guy.
Lily is sick again
Lily was due back to school today. But she was sick again. I’m getting very concerned as to what is going on. It doesn’t look like a stomach bug would normally look to me. Which leads me to wonder what else it could be.
The ideas that spring to mind. Is it is anxiety related. Her anxiety is certainly at a high level at the moment. But enough to be physically sick? The other is an allergic reaction. Lily has a history of allergy problems. The list of things she is allergic to, is ever growing.
Whatever the problems is. Hopefully we get is sorted soon. And Lily feels better. Lily will be off for the rest of the week now. With the 48 hours sickness rule at school. Then it’s half term school holiday next week.
We’ve got some arts & crafts and experiment type stuff to do in the holidays. I might have to get some out this week. To keep Lily entertained. Today it has been Jenga. Which is still fun. I don’t have a very steady hand. So I normally lose without having to let Lily win. To keep her happy. We have also been playing LOL monopoly. Which I’m not so keen on. But Lily enjoys it.
We have been having a “game break”. But I’m now being called back again. The things you do to keep your kids happy!
Today I’m going to be looking at using technology and online safety with autism. We all want our children to be safe, but you can’t wrap them up in cotton wool forever. First though, we had success this morning. It was unexpected, as last night Jack wouldn’t listen to us at all, but he went to school without his Nintendo Switch. However he did say he wants to take it tomorrow, so the issue is far from over. But today was a positive step, tomorrow I will prepare to do it all again. That’s just how it works.
Lily at home again
Lily was off school again. Just to make sure that if she did have a stomach bug, she wouldn’t pass it on to other children. So it’s not been a very productive week so far, especially as there’s so much work, around the house that needs doing. That’s without thinking about the garage or the garden.
But it has been a nice couple of days. I got to spend some time just with Lily. It’s been a bit full on as Lily has wanted my attention for what seemed like every second.
She especially enjoyed getting me to play Roblox with her. I’m no good at these sort of games. So she set it up and I followed her around, very slowly. I actually found it quite difficult to control, unlike Lily who wizzes around.
We were in some sort of theme park world. Lily was really excited to be giving me a tour of the theme park, and taking my character onto all of the rides. Sometimes Jack will play it with her. She enjoys that more, as Jack knows what he’s doing unlike me. It’s these sort of things that make you feel old, but like with anything involving Jack. It depends on his mood, and always has to be on his terms.
Technology and online safety with autism
I know there a lot of views on what you should “allow” your kids to do. Whether that be computer games, internet, social media or just TV. Online safety, lack of social skills, lack of physical activity are things that are talked about. I haven’t done any research. I don’t have facts and figures to prove or disprove anything. All I have is my opinions. That are based on common sense.
We don’t set any time limits on anything. We generally let them choose what they want to do. If they have been in front of screens for a long time, then we will go to them with ideas of stuff to do. Lily will normally jump at the chance to do anything. Jack not as much, with it very much depending on what you ask him to do.
One thing is for sure. If you ask either of them if they want to go outside and do something. At least 9 times out of 10 they can’t get out of the door quick enough. With that in mind. That is why I don’t worry to much about their time on technology, they do enough other stuff that I don’t see it as a problem.
Lily also loves art & crafts, board games and imaginary play. I don’t have any concerns about the time she spends on technology. Jack spends a lot more time on there. A few years ago CAMHS came up with the suggestion, to always let him have his phone, as it helped to keep his anxiety in check. In hindsight would another solution have been better? Possibly, but that’s what we did at the time and it works, so we have no plans to change it.
There can be problems
It has caused problems like him wanting to have the Nintendo Switch all the time, being the latest issue. But Jack needs to have background noise, even if he is reading or drawing. He will have music or YouTube on in the background. If you turn the background noise off, he will quickly become agitated and lose concentration.
I don’t know how this works at school, perhaps the background noise of the classroom is enough. But again, Jack is always happy to do other things. Especially if it’s outside. Because of that I don’t get hung up on time spent in front of screens.
Then of course you have the safety aspect. When they are online, as with everything. Most people are there just to have fun, but as we all know there are those people out there with darker intentions. When they are younger it’s fairly easy to put on restrictions. We have had no problems with Lily at all yet.
Jack on the other hand. He is now probably more skilled on the modern devices than I am. So there has been issues, but as long as you are doing the single most important thing that you need to be doing in this area. Then you will be fine. Keep an eye on what your kids are doing!!
That goes for all kids. Obviously there comes a time with most kids, where they have to be trusted with a bit of independence. When this happens with autistic kids can be massively different, depending on the difficulties they have. As we know each autistic person is completely different. Some may have learning disabilities, and some won’t.So I’m not offering a set of exact instructions here.
Just use common sense
It comes back to what I said at the start. Common Sense. You know your child better than anybody else does. You will know if they’re spending too much time on technology. If it is effecting their behaviour you will be the ones who can see that, and then take action.
Better than anybody else you will know if they have the know how, and responsibility to be able to act safely online. Jack doesn’t. So we have to watch him carefully, but at the end of the day it’s a modern world we live in. Everything is being done online now, and there are skills they need to learn.
For Jack it has been an area he has excelled in, and provides a big creative outlet. One that I’m very keen to encourage. It all comes down to watching them and using common sense. That concludes my thoughts on using technology and online safety with autism, I hope you enjoyed it. Remember, no one knows your child better than you do!
For more information on online safety, see my post that talks about and includes a social story on the subject, by clicking here.
Autism and anxiety at school go hand in hand with Jack. Being able to keep his anxiety levels low, is paramount to him being able to go to school and function properly.
It was an early start this morning. Lily came into the bedroom around 5, saying she was feeling sick. She seems to be saying she’s feeling sick all the time. But not actually being sick. So being half asleep. I didn’t rush into action. Big mistake, because of course this time she was sick.
She was sick 3 more times throughout the morning, but has been fine since mid day and is looking better. But the fact she seems to be feeling sick everyday is worrying. We are concerned there might be an underlying problem. So will be taking her to get checked over.
Jack’s problems at school
Between sorting Lily out and getting Jack ready for school. He took his Nintendo Switch to school again.
School have emailed saying he won’t join in class. All he wants is to play on his Switch, and he’s hiding underneath a table refusing to move when he’s told he can’t have it. Welcome to Jack and how he was at his old school. There has been some challenges at this school, but compared to what happened at his old school. There has been nothing major yet. This is a glimpse of what he can be like, when he is unhappy and/or finding things difficult.
One of the big issues Jack has is feeling safe and secure. We need to keep his anxiety down, for him to be able to function. He uses objects to do this. As I previously talked about. The snuggly’s are one of the big ways he does this. His phone is the other. Now he is wanting to use his Nintendo Switch.
Obviously this is something he can’t take to school and use. It wouldn’t be fair on the other kids in the school,
who aren’t allowed to take such things in. Jack has to abide by the school rules. He’s done reasonably well with this up to now. They’ve allowed him to take his phone, as he has a long taxi ride to school. On the condition, he hands it in on arriving at reception.
He is pushing the boundaries again. The easy assumption is he just wants to take it to play on but experience tells us to look for a bigger meaning. It could be something has changed at school. Just a minute detail that everyone else has missed, or something has upset or scared him. It could have happened weeks ago, but it’s only starting to show now.
Yet another meeting
School are wanting to set up a meeting to discuss it, and come up with strategies etc. We already have a child in need meeting and a EHCP meeting coming up for Jack, but we will fit it in, and some people think being carers is easy…..
He is going out with his DAS workers this evening. So I will wait until he’s back to try and talk to him. See if we can figure out any problems, and if we’re really lucky get him to accept he can’t take the Switch tomorrow.
There was no leaving the house today. At some point yesterday Jack heard something about the storm coming across the UK. I’m not sure exactly what, but it was a reminder of the importance of being careful what you say around autistic children.
I don’t know if he overheard the weather report or me and Natalie talking about it. Last night Jack wouldn’t go to sleep, because he was worried about the storm. He was sat with his phone on the weather app, continuously reading it off to us . He was under the impression that we were in great danger, because it said “warning” in a big red symbol on the weather map.
We told him that it was fine. The storm wasn’t here yet, and when it is here, we will look after him. He came back downstairs a few times. We just repeated the message, finally some time after 1am he finally fell to sleep.
I was up late today. When I checked on the kids, they were both in Jacks room. The wind had picked up. Nothing major, but stronger than anything Jack and Lily can probably remember. I could tell they were a bit nervous. They were distracted enough playing computer games, so I left them to get breakfast ready.
After breakfast Jack kept getting more and more agitated. Kept saying “I don’t think we can go out” and “I don’t think we can see Mack.” The Sunday routine of going to my parents, and seeing their dog Mack. I s something Jack really enjoys. So it was clear it was really bothering Jack. He was starting to get short and snappy. He got annoyed with the TV and his phone, knowing what the problem was we sat him down for a talk. With the thought in our minds, be careful what you say.
We told him that we are all staying at home today. We will all be in the house and perfectly safe. Thankfully this reassurance calmed Jack down. The anxiety just seemed to drain away, and he’s not been bothered since. Even watching from the window when the rain and wind really whipped up.
Lily didn’t say much until she started crying in the afternoon. When she said she was scared of the noise of the wind. It was getting loud at times, so it wasn’t surprising she found it difficult. As long as she had someone sat with her, she was alright.
The storm itself would have caused some problems. We don’t have many here. I can’t remember that last time we had anything significant. Even this one hasn’t been too bad, so far. It was another reminder to be careful what you say, and that what Jack and Lily hear they will take literally. He heard the word danger. He then thought he was in immediate danger. It took a lot of convincing to get him to think differently, and even then it’s only because we have stayed in the house.
Be careful what you say
This sort of thing happens a lot, especially with me. I am very bad at not thinking about what I am saying. One example that drives Lily mad is, since I was a kid, and I guess it came from my parents. I have called a persons nose, a beak. Every time I say beak Lily just looks at me funny. Tells me I’m stupid, says it’s a nose not a beak, and then tells me I don’t make sense. I just can’t get out of the habit of saying beak, as much as I try too. To the point it’s annoying me now. Does anyone else have these problems? Or do I just need to get a grip?
Lily is really starting to get very annoyed with it. So I am trying to stop it. But a 30 year habit is not easily broken. Trying to talk so autistic people can not just understand you, but also not become confused is so important. Yet so difficult when you have slang terms, idioms and metaphors engrained in your every day language. The other day I kicked open the living room door, and shouted out “there’s an elephant coming through”. When I looked at Lily she looked completely bewildered. I realised what I had done, as Lily cautiously leaned over to look through the doorway. She then turned back to me looking confused and said “Where?” So I was explaining myself again.
Their is an autistic author called Michael Barton. He wrote a very good book called, It’s raining cats and dogs. Which I found helped me understand the difference between how I hear things, and how the completely logical mind of Jack and Lily hear things. It’s so important to be careful what you say, as confusion isn’t good for anybody. Like I said. I’m still not perfect, but as with everything when you are bringing up autistic children. I am always trying to learn, and always trying to get better.
Today’s post, special friends go swimming, is about a great local charity. But first, Jack was at his over night rest-bite on Friday night. As I wasn’t feeling too well. I didn’t take Lily out anywhere. We just sat together and watched some films. It was Captain Underpants and Boss Baby. As far as having to watch kids films as a dad goes. These are two of the better ones.
This morning I still wasn’t feeling great. But Natalie was taking Lily to the park, before going to pick Jack up. And I wasn’t getting out of it. I was alright once I got there. Lily had fun with the park to herself.
The other day I talked about Jack’s dogs. Lily doesn’t use them to communicate. At least not yet. But she has her own dogs. She uses them for comfort, and to play. Unlike Jack. Who will take them out in his rucksack. Lily likes to hold them. At least for a while. Then I have to hold them. I’ve come up with what I think is an ingenious solutions.
Yes. As they are small. I can get them into my coat pocket. It does mean having to walk around the park. With teddies hanging out of your coat pockets. But such things don’t bother me. What I’m going to do in the summer. I haven’t worked out yet.
Special friends go swimming
After Natalie had brought Jack home. She took Lily to a swimming session. Organised by Special Friends. They are a small charity based in the town of Belper, in Derbyshire. If you are in the Derbyshire area. And you have a child with additional needs. I strongly recommend you check them out at http://www.special-friends.co.uk
Lily goes to the sibling group once a month. They also have a play group. They even organise things just for parents. I believe Natalie has been on a Mums one. I haven’t been on the dads night out yet. But would consider it. The need to get out and meet people who understand. Has really dawned on me recently.
They also do family events. Such as the swimming session today. Which was a sensory swim. With lights and floats etc that Lily really loved. Especially put on so a group of people in similar circumstances. Can get out and feel comfortable together. I can’t praise the work they do highly enough.
Their next event is trampolining. All 4 of us will be going. It will be the first time taking Jack to one. So hopefully he enjoys it. As with anything new. Taking Jack comes with a bit of trepidation. Because we know that it’s like when it doesn’t go well. But he’s doing well at the moment. If things stay that way. Then I think he’s ready.