There is a local charity near us, that I have talked about before. Click here to view a previous blog post about them. They are called Special Friends, and they are based in Belper, Derbyshire. Lily has done a number of different activities with them that she has really enjoyed. If you live in the Derbyshire area I highly recommend them. You can find more information at their website https://www.special-friends.co.uk/
Once again we go on the the current situation with Covid 19, as it dominates everything everyone is doing. Events that Lily would enjoy going to, which involve lots of other children, can’t be going ahead right now. Hopefully they can get back to business as usual when this is all over, and Lily gets one of her outlets back. Where she can just go and be a kid and mix with others, and not have the worry of Jack’s needs. Which sometimes do get in the way of what Lily wants to do, as much as we try not to let it.
A special friends surprise
Today a surprise came through the letter box for Lily. A plastic folder than had in side a certificate, a framed photograph and a couple of other things.
It had been dropped off by the people at Special Friends. For them to be making the effort to do this at this time, speaks volumes for the people running it. I don’t know how many children they did it for, but I’m sure every one of them were just as pleased to see the folder as Lily was.
In these difficult times, it’s the gestures like this that keep you going. It really brightened up the day for Lily. She has started looking a bit down recently, but this and a couple of other things have certainly made her a lot happier. So a massive thank you to the people at Special Friends.
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.
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.
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.
The latest look into how Autism effects daily life. On Mondays we have a few hours “restbite”. A couple of workers come from Derbyshire Autism Services and take Jack out. It is something that Jack really enjoys and looks forward to. He gets the 2 to 1 support he needs to go out into the community. Something we find very difficult to do.
I will take him out around where we live on my own. But there has been to many incidents that got too out of control. Because of that I won’t go further afield. Or anywhere likely to be busy on my own with him.
Last night right at the last second. We found out the session had been cancelled. One of the workers had a family emergency and couldn’t come. We know very well. Things happen that change plans.
But this has happened on a number of occasions in the last year. Each time we find out at the last second. There seems nothing in place to provide any cover. It’s all very frustrating. Jack needs a lot of pre warning for any changes. I dread having to tell him.
Luckily today Natalie was at home. So I talk Jack for a walk. He got to catch some Pokemon. Then we had McDonalds for tea, and watched the Scooby Doo movie. Jack was happy with the compromise. So was I. I’m not ashamed to admit McDonald is my guilty pleasure.
The other frustrating thing. Lily misses out on her time without Jack around. Where she gets undivided attention. We did manage to play in the garden for a bit. I was playing cricket, but Lily was hitting home runs. Still it was fun. Jack isn’t very sporty. So it’s nice for me that Lily enjoys sport.
Autism Services are a good thing. Even if occasionally frustrating. Our local one Derbyshire Autism Services, can be found at www.derbyshireautismservices.org