It’s a phrase that is used for many different things, but at the moment it can only mean one thing. Don’t mention the C word. Coronavirus. I’ve refrained from talking about it up to now, as I’ve felt no need to. But as the situation escalated here in the UK, today we had our first issue.
Lily has been complaining about pain in her ear. We rang up the doctor and were told they couldn’t see her, as they can’t offer face to face appointments. Instead we got a phone call from a doctor, who prescribed antibiotics despite not being sure what was wrong with her.
Yet Lily is still supposed to be going to school on Monday. It just seems like madness to me. Nowhere spreads a virus quite like a school. Maybe the situation will change by Monday, we will just have to wait and see.
The panic buying that has been going on, has been a bit ridiculous. But you think about how mad people go at Christmas when the shops are shut for one day. We really shouldn’t be surprised. We went out to get some shopping done today, as it was payday. In three different stores, there’s was no paracetamol, hand sanitiser or hand wash to be seen. One store did have some toilet roll, which appears to be a miracle.
We are fortunate enough to have been able to go out today, and we have some support around us to help us out. That’s not the case for everybody. There are a lot of vulnerable people out there. I wish people had shown a bit more consideration, when buying enough toilet paper to last a year. And don’t even get me started on the fact it’s completely unnecessary for this virus. If diarrhoea was a symptom I’d understand it.
There’s a lot of uncertainty around at the moment, which of course is the last thing autistic people need. Jack especially concerns me. If the schools do get shut, how is he going to handle his routine being changed? The answer is probably badly, he’s already struggling at the moment, so the last thing we need is his routine disrupted. School holidays that we have time to prepare for are problematic enough.
This evening Lily has started to look really poorly. Hopefully it is just an ear infection, and the antibiotics will soon put things right. But the uncertainty caused by not being able to get her seen doesn’t help.
How’s everyone feeling about the Coronavirus? Do you feel prepared for it? Are you worried about how you would cope if there’s a “shutdown”? Or if you caught the virus? Or are you still feeling like it’s a case of, don’t mention the C word? I’d like to here your comments on the situation and how you’ve found things so far. I’m sure I will have plenty more to say over the coming days, weeks maybe even months. It’s going to be a difficult time for everyone, but for those who rely so heavily on routine, this could be the biggest challenge we’ve ever faced.
It’s been a very busy week involving school and health issues for the kids. I’m working on a post about school, but first I wanted to talk about something else. What some people perceive as the “easy life” of carers. I know some carers get very annoyed and angry at people who think like that. Personally I try to just laugh off their ill informed judgment.
I’ll be honest in saying we have been on the brink of breaking point, on more than one occasion with Jack. His sheer size and violent behaviours were the issues for us, but everyone has their own problems. None are “easier” than the other. The demands on parents/carers are massive, and greatly under appreciated by too many.
The care part, is only half the story though. Looking after your child or children is a full time job itself for many. The demand of the physical care is full on. Then with something like autism, the “invisible disabilities” where what the problems are aren’t clear. You have the time and effort to just work out what the problems your child is having. This can sometimes take months and even years of research, discussions, meetings and trial and error of strategies.
A week of appointments
I’m looking forward to tomorrow, as we don’t have any appointments for the first time this week. It’s been a full on week, and it’s left me feeling tired. These appointments, which like with everything vary in nature depending on the child and what their needs are. Are something that if you’ve not experienced it yourself, are difficult to comprehend. Which is why some people fail to realise what is involved with being a carer.
To give people an idea of just how full on things can be, I’ll go through the first four days of this week.
The week that was(Lily)
Monday – Doctors appointment for Lily. With the GP regarding her problems with anxiety, and to get a CAMHS referral. On the surface this looks the simplest task there is, but unlike Jack we are just starting out with Lily, and have feeling like we have no idea where we are or what to do. So the time and effort trying to think up strategies and solutions has been massive.
Tuesday – Lily’s parents evening. Two appointments required, one with her teacher and one with her SENCO. This wasn’t your average turn up and hear how they’ve been doing parents evening. It was arranged to also talk over Lily’s issues and needs at school, which have really escalated quite quickly over the last term.
Putting together a plan to get a EHCP was discussed. Unfortunately Lily’s infant school was terrible, and the head teacher didn’t believe Lily had autism. So no evidence of any needs for Lily were passed over to her junior school, which has been helpful (high levels of sarcasm here).
The school were very honest, and agreed with us that Lily needs an EHCP. That she is struggling in mainstream school, and will eventually need to move to a SEN school. The good news is she is progressing really well with her work. The school have been really good, and provided lots of support despite not having any funding for her. I can’t speak highly enough of them. I don’t think we could find a better mainstream school to go through this process with.
The week that was (Jack)
Wednesday -The focus changed to Jack. It was his Education, Health and Care Plan (EHCP) review. We had to go to Jacks school and the review was with the school Deputy Head, Jack’s teacher and a school psychologist. Including travel it took 5 hours.
If you are unaware of what a EHCP review is like I will give you a brief idea. Big sheets of paper stuck onto a wall with various headings. We all write onto the sheets, things that are working, things that are not working. Then what needs to be worked on going forward, and how we are going to do that. This type of thing is mentally tiring on any subject. But imagine that subject being the health and well being of your child, and you get it wrong it’s them who suffer. Can you imagine that pressure? I felt exhausted Wednesday evening.
Thursday – No time to rest. CAMHS came to do a health pre assessment on Jack. Basically ten questions on different aspects of your child’s health, where you have to decide whether they fit into the category of, no additional needs, Low, Moderate or High. With the exception of challenging behaviour, which has two added categories of severe and priority.
You have to evidence each one, for it to go forward to a review, where we put the case forward to get Jack some health care funding. Although not the only thing, the major area for Jack is challenging behaviour. In order to evidence Jacks needs, we need to keep a log of all Jack’s challenging behaviours. The last thing you want to do after dealing with Jack having a meltdown down, is have to go and write about it straight away. But whatever needs to be done, we will always do.
Myself and Natalie are lucky that we have each other for support and help. I know people who are doing this on there own. Some have more than two kids they need to be carers for. As for this easy life of carers then. Carers should be treated as heroes, not frowned upon like they are in some quarters. We are saving the country money, we are not a burden, and far too often people are doing it with little to no support.
We are fortunate to be receiving good support, but that’s not always the case and more needs to be done to help carers and those they care for. As always I welcome any comments and if anyone wants to share their experiences? That would be great.
One final thing. During the CAMHS visit they said we should write a book as they are amazed with what we’ve done for Jack. We both laughed. They said they were serious, or do a blog or something. I told them about this blog, and they said that was great and asked permission to share this with professions and parents. It blew my mind. I was so incredibly flattered. It made feel the decision to do this was the right one, and that I am doing something that is truly worthwhile.
Click here to go to a Beautifully written piece by an unknown author, that’s fits this so well.
The last day of the school holidays today and it was probably the best day. Jack and Lily have a special visitor come to see them. Normally we go to my parents on a Sunday. But as the car needs work doing on it. They were coming to our house instead, and bringing Mack the dog with them.
Jack and Lily were really excited to have Mack coming. They were also cooperative with that fact we needed to tidy up. Then hoover all the floors for Mack to come in the house. Which helped me out. The house was the best it had looked all week.
Jack even came downstairs to wait for them to arrive. After barely getting him out of his room the past two days. That was good. When they arrived Mack was running all over the place. He’s a very excitable dog, and Jack & Lily find him hilarious. He also likes a lot of fuss. Which Jack and Lily are both more than happy to give him. He also likes to sit and stare at our Guinea Pigs.
We all took Mack out for a walk over to the nearby football/basketball court. Jack and Lily out together is only possible with the extra help at hand. Lily wanted to play football with myself and grandma. Whilst Jack just wanted to hit a tree with sticks. It got them both some fresh air and tired them out. Which was good. Jack found a great big stick that he wanted to bring home. Apparently he will make good use of it tomorrow. I’m not sure I want to know what that means. It’s not very often Jack and Lily have a special visitor, we normally visit them. So they really enjoyed today, which was nice.
Even after my parents and Mack left. Jack stayed downstairs and we all watched Lego Movie 2 together which was really nice. It’s something that is happening less often. As Jack wants to be in his room or watch something Lily finds scary. So you have to really appreciate it when it happens. Sitting through an entire film together. With everything staying calm, and everyone enjoying it. Is a massive deal.
Later on when Lily has gone to her bedroom. Jack had put Netflix on and was watching old episodes of Goosebumps. He’s really got into since watching the film. He’s become fascinated with monsters. So goosebumps is an age appropriate way for him to watch that type of thing.
It’s another thing that he finds fascinating, because I remember it from when I was a kid. He wants to watch some more with me tomorrow. I was thinking of getting him some of the books. Like this anniversary tin I was looking at on amazon. But I don’t actually know what sort of reading level he is at. I just know he can read. I will have to test him. Maybe just get a single book like this one. See what he can do and go from there.
Lily’s had some mixed emotions about school tomorrow. She seems to be torn between wanting to go and not. There’s been some tears and I am expecting tomorrow morning to be difficult. But we will see how it goes.
I was woken this morning by the sound of Lily crying. When I went into her, she was hiding beneath her blanket sobbing away. I asked her what was the matter? She replied “I don’t want to go to school” I told her it was the school holidays. So she came out from the blanket and cheered up. It’s fair to say I am really worried about Lily.
Next Monday I am expecting this to be repeated. I don’t know what I can do to stop it either. Myself and Natalie have been talking over the school situation. We really don’t know what to do about it. Anyone who can help? It would be appreciated. Feel free to leave a comment or contact us directly through the email.
We had arranged for Lily to go to her cousins house. The one she saw yesterday. When I reminded her about that, she really cheered up. My brother came to pick her up and she went happily. After about 10 cuddles. Lily really doesn’t like leaving us. But she will, all be it slightly reluctantly if she’s going somewhere she likes.
An afternoon with Jack
That left me with just Jack for the afternoon. As he goes out with carers on Mondays. We just stayed at home. He wanted me to watch some episodes of Pokemon with him. Whilst also building some Lego. He got so many sets for Christmas and his birthday. I don’t think even half of them are built yet. This Lego Ninjago set is the one we are building currently. (Affiliate link)
Jack seemed to enjoy the fact I was doing his Lego for him. So he started playing on his Switch and left me to it. It wasn’t finished by the time he went out. So we agreed to finish it tomorrow.
I picked Lily up from her cousins. She had a really nice time, which was great. She didn’t want to come home, and got upset when it was time to leave. So we arranged for her to see him again tomorrow. It’s good that we were able to do that. But it’s another moment where I am really worried about Lily. She has always not liked leaving places. But she got really upset.
It feels like she is crying for help. But I don’t know how to help her. What do I do? It’s going to take a lot of thinking and guess work. To try and uncover what she needs. But we will get there. Just like we have done with Jack in the past.
Today I’ve decided to share what I like to call, our Special School Horror Story. It’s horrible outside and not much is happening, Jack and Lily have barely been out of their bedrooms. Lily does this sometimes but not to often, for Jack though this is a fairly normal Saturday.
Every Saturday he says he’s tired, and to be fair he normally looks it. So he wants to stay in his room most of the day. We used to try to encourage him to come out, but that only caused problems as it would irritate him.
After thinking about it. The school week takes a lot out of Jack. It does for all children but with all the extra things a child like Jack has to cope with it must take an ever bigger toll. We almost take for granted now, that Jack will go to school 5 days a week, and he will travel in his taxi with no issues.There was a time this wasn’t the case at all.
Special school horror story
Before Jack found his way to his current school. It was a very different story. One I like to call our Special School Horror Story. I’ve mentioned it a few times, and I will go back and tell you the story in more detail. It’s not a particularly nice story, but at least you know it has a happy ending. As Jack is on a much better place now.
Jack was diagnosed with Autism at a young age. He was only 18 months old, but when it came round to choosing a school. We really didn’t know what to do, originally we were just going to send him to a mainstream school, due to advice we were given by the professionals, that we were seeing at the time. Advice we now realise was terrible, and that is putting it mildly.
It is only because we moved out of the city and into the County Council area where we live. Which meant all the professionals we saw changed, that it quickly became clear that Jack was not suitable for mainstream school. But it was to late for starting in September, so we had to delay him starting school.
The best specialist school for autism in our entire county, is literally on our doorstep. But we were told it’s almost impossible to get a place. They were right. We looked at other schools in the area, and in the end Jack got a place at our second choice, which we were happy with as it seemed a good school.
Jack Starts School
He started in January and that first half a year went well, and we thought we had made the right choice. How wrong we were.
The second year started ok too, but then the problems started. Jack was at a general special needs school, not an autism specific one. So there were children of varying conditions. One of Jack’s biggest problems is loud noises. He is hypersensitive to sound, he also doesn’t understand that if he does something once. It doesn’t mean he can do it all the time.
So of course they put him in a class with children who’s conditions meant they made a lot of loud noises. Then they had him take a toy in for show & tell, which meant he then wanted to take a toy everyday, which he wasn’t allowed too, but couldn’t understand why. It caused problems with Jack’s behaviour. As he was still a small child the school appeared to be dealing with it. I will state here that because of what comes later, I do not trust any thing this school ever said.
The troubles really begin
Year 3 at school started off ok. We now know that it takes Jack time to settle in, before he starts display his behaviours. He needs time to get comfortable with his surrounding. Then he will push back and test the boundaries, hitting and kicking and pulling your hair, throwing things around and spitting is what we’re reported back to us.
It’s like he needs to get comfortable with a situation or person, before the real Jack comes out. Which is why when people meet him for the first time, they think he is lovely. Which he is when he is calm, and they find it hard to believe the story’s you tell them, regarding what his behaviour can be like. We’ve had support workers ask us if the reports they get on a child’s behaviour are right, after having a couple of sessions with him. Especially more recently when he has calmed down a lot. We have to keep all safe guarding in, because Jack is so big and strong, if something does trigger a meltdown, it becomes dangerous for everybody.
Travel to school
Jack started off going to school on a mini bus, where there were 14 kids on the bus, and he really struggled with it. In the end the transport broke down. He was continuously refusing to get on the bus, and if he did get on, often it would be too much. He’d get aggressive with the passenger assistants, and then refuse to get on the bus at home time. So in the end we took him to school ourselves.
Again there was noisy children in the class, and the behaviour started again. For the last term of the year, as his teacher was pregnant. The school moved Jack out of the class on safety grounds. He was moved to a class where the kids were older, more advanced and no one who was continuously noisy. Apart from the odd moment he had a good last term, and we thought it showed an obvious solution to Jack’s problems at school.
The special school horror story really starts
We were told that for year 4 at school, he would stay in that classroom. Well it was the same classroom. The same teacher, but not the same children. Considering by this point it was agreed by pretty much everyone, that the noise of classmates was the biggest issue Jack was having in school. When we saw the children that were in his class, we couldn’t believe it. It was like they had rounded up all the noisiest kids they could find.
Shock, horror. It wasn’t belong before the behaviour started again. Only now Jack was getting bigger, so the staff were getting hurt. We started getting the phone calls. The calls that he needs to come home, because he’s smashing things up, or refusing to do anything. This then resulted in Jack not wanting to go to school, and thinking he didn’t need to go. The school started not very subtly suggesting, that Jack might be better at another school.
The battle to get Jack to school
The battle every day just to get him to school was unreal. I only did it on Mondays due to work. The physical and mental strain it took is difficult to explain. If you’ve not experienced it, it basically feels like you are in a fight. You are being hit, but you can’t hit back. You just have to try and calm him down.
It’s difficult to do when Jacks at the point of punching straight through glass panels. Yes he has done that, and some how he was only left with a scratch on his knuckles. Strangely enough it was around this time. That the services involved started listening to our pleas for help….
Anyway these battles to get Jack to school, would take 1-2 hours most days. Then he’d be there an hour or 2 and they would ring for us to take him home.
Realising something isn’t right
They started to put him in a small library, that was connected to the class room. So he would be in a quiet room, and he could integrate with the class on his own terms. Apparently when no one was looking, he climbed out of a window. Which happened to be outside the security fence that surrounded the school. Great design!
It was only when the head teacher saw him running around the car park, with a big stick hitting all the cars that anyone noticed he’d gone missing. Which obviously left us with a lot of questions. How long was he being left in a room on his own. It just didn’t sit right, but the school weren’t forthcoming with any answers.
Then one day we came to pick him up from school, and we found him outside on a small playground on his own. It was the middle of winter, it was a cold day and he didn’t even have a coat on. School told us they called us because Jack had been kicking a glass window and it had cracked. That’s what the thought anyway, they didn’t actually know how it happened when we asked them.
So our first question was, How long have they been just putting him outside? Out of the way, so they didn’t have to deal with him. There was no way we were going to have Jack go to a school, thattreated him like this. We know more than anyone how hard it can be to deal with Jack, but never have we just thrown him outside on his own.
The school claimed they only did it as a last resort, for the safety of the children. In his time at school Jack never hurt another child. Claiming the only option was to leave a distressed autistic child unsupervised was not good enough.
Deciding it was time to find a new school
We told the school that we were looking to change schools. Honestly, they seemed relieved. The sly comments and suggestion they might have to exclude him, had been going on for well over a year. The plan was to try and see through to the end of the school year, as we were in the final term. School would sort things out to just keep Jack happy until the end of the year. They sent him over to the sixth form building, with the sixth form age kids. Who were all calmer and more mature, they supported Jack and he had a great time. That lasted for one day, and they put him back in his old class.
We were looking at just pulling Jack out of the school. Looking into who we would need to notify etc… but it wouldn’t matter I got a phone call whilst at work. It was the school wanting me to come and pick Jack up. When I got there I could hear him before I saw him.
He was out on the play ground again. He was growling and kicking everything. Normally when we came to pick him up, he was happy to go home. This time it took a while to get him to calm down enough to take him. Then it was only when he was alone with me that he properly calmed down, which really had my mind wondering what had gone on.
Jack gets excluded
We didn’t have to worry about him going back, we were informed he was being permanently excluded for kicking a teaching assistant on the shin. Now I’m not saying it’s ok to go around kicking people, but this was a special school, where many children, not just Jack would lash out at times. To me it was a weak excuse to get him out quickly, as they knew that’s what we wanted anyway.
I’d even go as far as to say it was planned. They put him back in a situation they knew he wasn’t coping with. Then at the first opportunity he was excluded. This happened just after school were told, that they would get extra funding for Jack. Including a porta cabin class room just for him. It was clear they didn’t want that to happen, but at least it was an end to our special school horror story.
Jack at home
For the next 3 of months we had Jack at home, whilst trying to find him a new school to go to. Whilst also being expected to home school him, eventually we had a home tutor come out 3 times a week who was very good with Jack and did a great job teaching him. We went to pretty much every special school in the county, and not one could meet Jacks needs. We’d heard this before when making enquires over the past couple of year, which was part of the reason we weren’t quick to pull Jack out of school. Finally we found a school in another county a 45-60 minute drive away.
Reflecting on the situation
Not everyone at the school we’re to blame. The staff tried their best in difficult circumstances. The family liaison officer was very good, and continued to help us find a school after Jack was excluded. Going to view schools with Natalie whilst I would be at work or with Jack.
But the Head Teacher I have no good words for, and I will leave it at that. I’m sure you’ve noticed I haven’t mentioned the school by name. Since Jack has left we have discovered a few things.
Hearing of other children’s problems
When parents asked where Jack had gone. The school told them we had chosen to move him to another school. We got word to people what actually happened, and the news soon spread. Next thing we knew, we were being told stories from other parents of the same things happening to their children. That had happened to Jack. I know that at least 2 kids are looking to be moved school.
The Head Teacher doesn’t like any of these stories being talked about. Not even in private WhatsApp groups, and has made threats to people of legal action. So I won’t be naming any name, but if anybody is looking at sending their child to a special school in the Amber Valley area. And would like some advice, feel free to message me. You can use the contact page on here, or find me on Facebook, or twitter @DadDoesAutism
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!
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.
Some good news today about Lily making a new friend. We have done pretty well, with the seasonal viruses this year. Because I have asthma I usually pick up every bug going. Not so much this winter. This morning though, I woke up feeling terrible. So I’ve not got much done at all today.
Yesterday, when I took Lily to school. She saw the child she has been trying to make friends with. She started to walk over to him and then stopped. I told her go over, but she looked really nervous. After a bit of gentle persuasion she walked over.
Then they we’re off walking and talking. Lily has come back from school much happier the last two days. She has told me all about playing with her new friend. It has made me so happy. Lily has always needed someone to come over to her. To ask her to play. For Lily to be the one initiating things is such a massive thing.
After the difficult start to the week for Lily. I’m so pleased it’s finished on such a positive note with Lily making a new friend. Hopefully this is the start of things getting much better for her.
Jack has been very keen for me to put the Snuggly’s on my website, he would tell you THEY have been very excited for it. So this post is about introducing the Snuggly’s to you. As you can see in the photo above, the Snuggly’s are three stuffed dogs. From left to right we have, Jasper, Fortnite and Minecraft or Crafty for short.
Jack has always liked his teddy’s. But two years ago Lily had a birthday party at Build a Bears. Jack didn’t want to go, but because Lily didn’t want Jack to miss out on a bear. We said she could make one for Jack. That was Minecraft the Dog. It started something we never expected.We hoped he would like his dog, it turned out that he absolutely loved it.
He is desperate for a real dog, but that is not possible in the house that we are currently renting. So we got some Guinea Pigs instead, they are called Buffy and Biscuit. We had another one called Fluffy who sadly died. Both children love the Guinea Pigs, but they are not as fun as a dog.
I had a dog when I lived at home, which stayed with my parents when I moved out. He was a Border Collie named Dylan, and Jack really liked him and formed a great bond with him as a small child. Dylan was very playful, and enjoyed lots of fuss. So he was perfect for Jack, who being the first child from me or my brother, and also going to school several miles away from home. Never really had anyone to play with. He was very upset when he died a couple of years ago. Last year my parents got another Border Collie called Mack. Both Jack & Lily love Mack, he’s just as playful and enjoys Justin’s much fuss as Dylan did. He will pop up in my posts regularly.
Back to introducing Snuggly’s. Jack is pretty much never parted from his 3 dogs, he takes them everywhere. He takes them to school everyday. They go with him to respite, and whenever we go out. To him they are like his comfort blanket, he feels safe and like he’s not alone when he has them. He did forget to take them on a respite outing once, and 10 minutes later he was back to get them.
At school they have become like the class mascot. When we visited the classroom during the Christmas fair, the dogs were out and about all over the classroom. One of his friends even painted this picture of them for him, which was really nice.
One time Fortnite’s ear got damaged, which Jack was a bit upset about. Jack is in a class of 6 or 7 very boisterous boys, so accidents happen. He accepted it was an accident, and after his Gran fixed the ear. Jack continued to take them to school, which was really good.
Interaction with his Dogs
Jack likes people to join in conversations with his dogs, which is why he’s. Happy with his classmates playing with them. Too him they need the fuss and playing which any dogs need. He likes to get you to communicate with them, 3 or 4 times an hour when I am with Jack. I will be asked how I think the Snuggly’s are? He will be holding them, getting them to jump around and wagging their tails. I always answer “they are snuggly”, and usually they get thrown to me for a snuggle.
Jack will get you to hold them, then ask them a question, and he will then expect you to answer for them. Usually it is something simple. Like “do they want to play? or “do they want a snuggle?”. Jack really enjoys these interactions, so that gave us an idea.
When Jack doesn’t want to, or can’t talk, whether that be he’s upset by a real life experience. Like when his Auntie passed away, or something has upset him from his games. Even when he’s having a meltdown. We started trying to communicate with him using his dogs. Not talking on these situations is not a choice for an autistic person, the anxiety and being unable to process his emotions. Leaves Jack unable to communicate how he would want to.
Helping to avoid meltdowns
We have had some success with this, I t’s not perfect, and it doesn’t work every time. Especially in a full scale meltdown, but he is more willing to communicate this way. They can have a calming effect on him. The key with meltdowns, as always is to recognise the triggers and get in there early. To prevent them from erupting before it’s too late, because m once he’s in full meltdown. It can be a long way back.
If you can do that. He can be distracted by his dogs and it will calm him. How long this will take, will depend on how high the anxiety and frustration has built up. To be honest I did feel a bit silly at first, I was like a ventriloquist with these 3 dogs. Trying to have very serious conversation, but acting like a bit of a clown. It’s what Jack needed though so I stuck with it.
The alternative is deep pressure, which possibly and quite often with Jack, leads to him fighting back. When he was little this was ok, but now he’s 12 and already bigger than me. I’m not small either! You need jack to be willing and compliant before you can try deep pressure, which is where the Snuggly’s come in.
Using them to get Jack to open up on difficult subjects
The really big breakthrough is getting him to communicate what is troubling him. What’s making him sad, or angry, or confused. This was done with the passing of his Auntie. When Natalie has been ill and when he has been unhappy. Both at home and at school we needed something, because we’d spent years with nothing really working.
This can be done either way. I started using the dogs to ask the questions, Jack would sometimes answer. Even if it was only with a nod or shake of the head for yes and no. Occasionally we have managed to get more out of him, but just getting the yes and no answers is a big step.
A lot of Jacks problems in the past we believe have been through frustration of not being able to communicate what he’s feeling. He is verbal, but uses a lot of echolalia. So what he’s understanding and what he’s able to say, are poles apart. To be able to find out his feelings, we need to be able to ask the right questions. The dogs have given us an effective way to ask, that Jack is happy with. Now it’s just a case of asking the right questions, to find the right answers.
How school are now using them too
Jack has been having one to one psychology sessions at school. We get sent a report of each one he has and , they have made for some interesting reading. Jack wouldn’t answer their questions, buteventually he did using one of his dogs. So now that’s what he does, just like at home they ask the question, and Jack uses the dog to answer. Again mostly nods and shakes of the head.
That is all for introducing the Snuggly’s. I don’t know how common this is with autistic children. I’ve certainly not heard much about people communicating this way. If you have, or something similar I’d love to hear about it. I’m always open to new ideas, and I believe any ideas that are working should be shared far and wide. Not every idea works for everyone, but you never know which idea will be the one that works for you.
There is a Tips & Strategies section, which will contain all posts that contain that sort of information. Whether it be ideas we have used, successfully or unsuccessfully, or ideas we have heard about and are looking to use. There is a list of 15 behavioural strategies on this website, that you might find useful too.
After the post earlier today, when I was feeling really down in the dumps. I wanted to come back and share positive new, and talk about autism and art. Lily came out of school looking really happy. She said she had a good day. She was very happy that a child had said they would play with her tomorrow. A child she doesn’t normally play with. But she has been mentioning recently.
It seems like she has been trying to make a new friend. And she is succeeding. Which is a huge thing for Lily. She has often said to us. That she can’t make friends. It feels like she is proving to herself that she can. I believe this child is also autistic. Which could be where the common ground is. Or could just be coincidence. I don’t really know.
Autism and Art
So finally we come to the great thing Lily did at school yesterday. That everyone was really proud of her for.
Over the weekend Lily started making a rocket. It wasn’t a school project. We hadn’t given her the idea to do it. She just took it upon herself to start making it. Most of it she did by herself. She got a bit tired Doing the red and yellow strips. So she got me to help. Then when went to her grandparents. Grandma was roped in as well. Autism and art is something I’ve been reading up on, with Lily taking such a keen interest in art.
Show and tell
When it was finished on Monday. Lily told us she wanted to take it to school. So she could do show & tell. Again, this wasn’t something school had asked her to do. She just wanted to do it. So on Tuesday we took it to school. Off to class she went with it. I wasn’t 100% sure if she would tell them what she wanted to do.
Natalie went to pick her up from school. When they got home. I heard all about it. She had asked to do the show & tell. Lily has always been quiet in class. So her teacher and assistants were absolutely delighted that she wanted to do it. They told Natalie she was brilliant and they were really proud of her. And that all the class gave her a big round of applause.
Lily was bursting with pride when she came to tell me. I had a lump in my throat…