7

DIS – Week 3

Parking today was a lot easier. One of the two parent spaces outside of the children centre was free, I mean why do they only have two near the place. If they had more hopefully all the adults just going to the doctors or an outpatients clinic wouldn’t park in the children centre car park and it would make easier parking for everyone attending the children’s centre!

As we walked in today she was already waiting for us by the door, fantastic! I  am ever so pleased with how accommodating she has been and it makes it a more positive experience for everyone. She gave Dylan the little spade that he uses in the sand and he ran right along to the room.. well past it a little and I had to redirect him but he was trying to find the right one. She opened the door and off he want straight to the sand smiling as she sang the little song and filling up the shapes with the sand.
Great, what a wonderful start, even better than last week. I was trying to contain my excitement as I knew the difficult part was coming up.
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She then showed him a piece of jigsaw to make him aware that it was time to go do some work. He went straight over from the sand to the next table without a fuss, he was very happy to change in-fact more than happy to change to the jigsaw and posting activities. I couldn’t believe my eyes and she then aided him in putting them away in the ‘all done’ box, and by his third task at this table he was then putting them in the box himself! How incredible!

Time to move to the water tray and he knew straight away that the fish meant the water tray so he ran straight over and proceeded to soak the lady and himself but all while having fun so that’s all that matters!

He wasn’t so pleased about leaving the water tray but with little encouragement and being shown what he was going to be doing at the next table made him more than happy to cooperate. At this table he did lots of colour matching which he is very good at and he really enjoys trying to say his colours. He also played with lentils at this table and thoroughly enjoys burying his hand.

Next up was the last station before it was time to go home, she showed him the train and off he went straight to the mat to play with the trains and pop up toys. It was then time to go after that.. he found leaving the most distressing today as he was having such a wonderful time!

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He was absolutely amazing at DIS today and it seems that week 2 was not just a fluke! It seems like such a strict routine really is key to helping Dylan. I also think that him being able to walk straight in without having to wait in the waiting room with others around his has been a huge help.
I can’t wait to see how the next three weeks go and then what they are going to do for him with this being such a success. I’m hoping it will mean that they will try to do some speech therapy on a lot more regular basis and some occupational therapy too.
Fingers crossed it keeps going so well and we will be offered more regular support after this!

What is DIS?
DIS week 1
DIS week 2

-WeeOhana

5

DIS- Week 2

This week I had arranged with the lovely therapist that we would meet at the front desk so that we did not have to go into the waiting room with other people. This works well as he is her first appointment of the day, so she can ensure she is there promptly.
We arranged this because people being close to Dylan or looking at him causes him a lot of distress, so to have this 6-week course of DIS working as successfully as we can he needs to in a calm, happy and cooperative mood. 

One thing that I must say is that parking is crazy here, so even though Dylan’s appointment wasn’t until 10:15 I went straight over after dropping Amellia at school! It took about 35 minutes going round and round the car park to finally find a space! Thankfully Dylan is really good in the car and he sat happily waiting until it was time to go in. 

We went in and waited for all of about 2 minutes at the front desk before she appeared, which was fantastic! Dylan was then shown the spade for the sand and he was really excited going through the sets of doors to get to the room. He really enjoys playing in the sand so this is the task that he will always do at the start so that he begins with a positive and knows what to expect… Routine is key!! 

He happily played in the sand, smiled when she sang her little song and it was going fantastically! Though this went well last time too, so I didn’t build my hopes up too much though it did give me a smile! She then showed him the next item.
After a little protest he was more than happy to take part in the next few things. They were posting tasks, and this is something that he really enjoys at home and I had told her last week. She aims to put things around the room that he enjoys so it makes moving from task to task an enjoyable thing for him. After finishing the posting activities, he then had to move to the next table.

He wasn’t as happy changing to this table as he was moving to the previous activities but with some gentle encouragement and sitting him on my knee for a few minutes he was then really enjoying the activities and I was able to move away. He then proceeded to colour match on several different occasions which was fantastic!
Finally, then he moved onto the last task before a quick play in the sand and going home.

This week’s DIS was a huge success and I am hoping that all the others will all go as smoothly now that he knows what to expect when he enters the room.
I think not having to go into the waiting room was a huge help and I am very glad that she has made changes to how she usually greets the children who attend to try and enable this to be a positive experience for Dylan! 

Fingers crossed next week goes as well! =D

If you want to check out what DIS is or how the first week went check them out;
What is DIS?
Week 1

-WeeOhana

 

 

4

DIS- Week 1

Before I start, if you missed me explaining what DIS is, check it out here then you will understand this blog a lot better.

I walked in feeling positive, we played in the waiting room… until another family came into the waiting room. Dylan started screaming, flapping, lashing out etc, so I took him out of the waiting room for a walk to calm him down and thankfully the lady arrived!

She showed him the spade for the sand and he was very happy, knew exactly t into the room and up to the sand. Perfect, I got my hopes up while I sat on the chair and watched him play in the sand and dancing along to the lady singing… but then it was time to change task.
She took his hand, showed him the object for the next task and led him over, kicking and screaming. She then asked if I could come and help her… by help her she meant hold Dylan still while trying to encourage him to do the task. Holding Dylan isn’t an easy task, he’s a lot stranger than he looks and when he is flailing around, screaming and grabbing at you it’s pretty hard to try and encourage him to do a task too!
She kept at it though and completed the tasks herself and kept showing him the different objects for the next task.

We got through 6 tasks like this, I’m not quite sure how I managed. It was tough, I have a very sore shoulder from battling with him like this on a daily basis but also mentally this was really hard. Having to restrain him while he is screaming to be free, having to try and encourage him to do things that he really didn’t care for, was very tough.
I had to keep telling myself that it was for his benefit, that it was to help him.

Thankfully she then brought out some dried lentils for him to play with and this settled him and he had lots of fun with these, then over to trains and some colour matching before the sand and home!

He managed to make it through 3 tasks out of 10 without having to be held and made to do them.
Let’s hope next week goes smoother.

Check out how week 2 went here!

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21

I wish this would never happen again, but it will.

Something happened yesterday with Dylan that hasn’t ever happened before.

We are used to his meltdowns. During a meltdown he screams, hits himself, throws himself at the floor, bangs his head off the wall, lashes out at us or anyone around him along with many other things he does during a meltdown.
Generally I can tell when a meltdown is coming on and will try to get him to relax with some deep pressure massage, distraction with colouring, his iPad or turning the lights off and using his star light that he has that projects stars onto the roof.
Yes they are very tough to deal with, but I suppose in a way I have grown a thicker skin to these.
They are not fun to deal with, and when he is in bed or once he has settled and is fine I will have a cry. They are emotionally and mentally exhausting, sometimes physically too when you have to restrain him from hurting himself or others around him.
IMG_0995.JPGYesterday though Dylan had a shutdown. This is something that I have never been aware of, or heard of until it happened.
Dylan & myself were happily playing, I stood up to get a drink and he happily carried on playing then about 1 minute later he burst into tears.. he was crying like he had really hurt himself.
I quickly went back to him and picked him up and checked him over to see if he was hurt anywhere (a really tough thing about him having no communication skills or verbalization is that if he is hurt etc he can’t tell or show you) He buried his head into my chest and was clinging to me, I sat down on the sofa to which he normally rejects and makes you stand up to sooth him, but he just buried his head in harder. I talked calmly to him and tried to lift him away from me too look at him and distract him. This was not going to happen. He is pretty strong when he wants to be!
I took his clothes off incase he was too warm, or a label had been annoying him all day, but still he refused to look at me, or to be moved away from my chest.
I went and got a blanket and put over him to ensure he didn’t get cold and he pulled it over his face and then grabbed my arms into it and pulled them around him to hold him close. This is something he hasn’t ever done before.
I tried a few times at the start to sit him up and interact with him, but he got very distraught by these attempts so I stopped.
I held him close, while he snuggled in with his eyes tightly shut from the world, and I cried.
I felt so helpless, so useless, like I had failed him, how had I not spotted that things had got so tough that he had to shut down, hide away from it all.
I hated this cruel world, autism, my ability to not read his mind, not knowing how to help my son, it’s an awful gut wrenching feeling. A feeling I wouldn’t wish on anyone.
Thinking about how useless I felt and was then is putting tears in my eyes again now.
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He sat with his head buried into me with no response, no babbling or anything at all for an hour and a half. He then responded a little and would get up and go for a short walk but then would be straight back to me, with his head hidden from the world.
It then took about another 30-45 mins till he was back to his usual self.

There was no warning signs, nothing out of the ordinary happened, he seemed very content before hand, no triggers that I can think of, nothing I am aware of that upset him.
I’m stuck wondering what made it happen, desperately wanting to prevent it from happening again, but with no clue how.

 

9

What is DIS?

The other day we went along to our first DIS appointment (I’ll explain what this is in 1 second!) and were told not to expect it to work out well for Dylan but they wanted to give it a shot anyway. So of course I was game to try it, I mean anything that will help him is worth a shot really isn’t it?

So; DIS stands for – Developmental Intervention Services. Basically what they try to do is help your child to prepare for going to nursery in the near future. They do this by encouraging them to move from one task to another without fuss and to sit nicely in a seat when playing.
Going from one task to another is something that a lot of autistic children find really hard and something that Dylan really struggles with. They encourage this by a lot of adult led play, and hand on hand play to encourage them to try the new things.
Also by use of an object to show to the child that the current activity has finished and its time to move on to the next one to see what this items purpose is.
They set up several things on various tables that your children like so that they hopefully find moving to the next table an enjoyable experience and not so distressing.
To be able to do the next task at the table they need to be sitting down in the seat so that they can enjoy it. At the start of this they made find this difficult but we got around this by letting Dylan sit on my knee at the start and then by gradually putting him on the chair and me sitting beside him and moving slowly away until he is then hopefully good-by the end of this at sitting down for a short period by himself.

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When we went today I wasn’t sure what to expect and after being told that they didn’t think it would work to well with him, I was trying not to get my hopes up. Though I went in feeling positive and fingers crossed. He wasn’t so upset by the waiting room this time, but I think that’s because I just let him free roam and he wanted to walk up and down the hallway so I let him do that rather than upsetting him and then this having a knock on effect to how well he coped with the DIS.
As we were taken into the room we met the lovely lady who was going to be doing this with us and his speech therapist was there to aid her with him as she knows what he can be like.
He went into the room without a bother which is pretty unusual for him in an unfamiliar place, and went straight over to the sand pit! Over the summer we have spent a lot of time at the beech filling buckets and emptying them so he loved doing this task, she then moved him onto the next one with lots of adult led moving as he wasn’t very keen on leaving the sand but then settled to the next few tasks well, after about 5 minutes he then decided he wanted back to the sand so she asked me if I would try him on my knee to try to encourage him to stay on task and surprisingly this worked wonderfully.
Though again after a few minutes he wanted back to the sand, she then decided that it was time to let him go back as he had coped really well with what she had done so far!
Fantastic news!
We then got asked a few questions and asked if we would like to try him with the six-week course, and I jumped at the chance. She told me that she would be very willing to do this as long as I agreed to be her helper while we were doing this to help encourage him and of course I agreed to this!

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Roll on the next six Thursdays mornings! =D
Check out how we got on here;
Week 1
Week 2

-WeeOhana

0

The impossible wish.

I wish I could spend a week, or even a day being you.
I want to know how this world seems to you

What makes you smile
What makes you cry
How all these noises sound to you
Why you don’t like eating ham
And why you love mince so much
Why playing with letters is one of your favourite things
But putting them together to make words seems.. well I guess scary to you?
I wish for this so I can really understand you
So I can understand why you dislike so much that brings others joy
And how things Bring you joy that I don’t understand why
I want to bring you all the joy possible
But how am I meant to when I have no clue what it’s like being you
Or what is going on in your little world.

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6

Think about you.

Trying to keep on top of your own mental health is really vital in life.
I feel that it is really essential to try to keep a check on yourself whenever you have a child with additional needs.
It does completely take over on all of your thinking, planning, time and very quickly you can get very worn down.

You need to stop, breath and think about you.
How are you feeling?
– If you aren’t sure, talk to someone. A friend, partner, someone who understands. If you regularly feel low, that you can’t take much more contact your GP for a chat.

When is the last time you did something for you?
– Have you managed to have some time to yourself or with other adults to actually relax?
I don’t mean just tidying when the kids have gone to bed, having a coffee, I mean something properly for you. Make sure to visit your friends, get out of the house and go for a walk, go to the shops and only look at things for you, do something that you enjoy and try to make it a regular thing!

Are you just holding on, or are you standing up tall? 
– 
Standing up tall? Fantastic! Though if you are just holding on, feel like you are at the edge, stretched too your limit, at the edge. Seek help. With kids with additional needs you never know what is around the corner and you don’t want it to be the thing to tip you over.
Your child/ren need you. More so than others, if you won’t fight to get them what they need, who will? GPs are very understanding and supportive. Don’t make an appointment for a few weeks down the line, take the emergency appointment and get seen that day. You need it.

Yes, you may have been here before and got back on your feet, and forgotten it for a while, but it will come back when you least expect it.
Please don’t feel embarrassed, scared, afraid, just make that phone call.
Your family and friends may tell you that it will all be ok and that you are ok, but you have to feel it too, and I’m sure if you are in this position you do not feel it.
Them shrugging off what you tell them, ignoring it, or just replying with the generic “you will be ok.” That is not enough.
Go to the doctor, talk it through with a professional and then tell your family and friends you are getting help and you would like their support.

Sometimes family and friends are so used to seeing your strong exterior, your fight, your smile and get up and go that they can’t see how much you really are struggling deep down.

You can do this.
Support is out there.
Don’t be fobbed off.
Your family need you.