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Getting Dylan’s Education Plan Underway

We finally have started the ball rolling for getting Dylan sorted with a school.
The education board came out and asked us many questions though this wasn’t after me phoning them and gently reminding them that they are meant to have seen a child within 22 days of accepting them.
A lovely and friendly lady came over to meet Dylan and chat all about him so that she could get a full and informed report to help him get through all the stages quickly and hopefully with as little fighting as possible.IMG_0870.jpg

Like the majority of Dylan’s appointments it was pretty tough. You find that you are always talking about what he can’t do and what he should be doing, They ask you if he can do certain things and 9 times out of 10 its a “nope he can’t do that.” I know that this is to get him the help that he needs and to ensure that he gets it but as a parent it is a really tough thing to do.

I was hoping that this appointment would lift a whole load of stress off my shoulders and settle down a whole heap of the worry I was having unfortunately it did not. I understand that the lady who came out to us doesn’t want to give false hope but she said that she couldn’t tell us either way if Dylan would get through the Stages but then also went on to tell us that it isn’t often that she goes out to see children as young as Dylan and it is so obvious to her that they are autistic.
When she left I was so confused. How could she say such contradicting things, though she recently called to let us know that he has got through stage three easily and her boss has told her that she thinks Dylan will get up to Stage five without any questions. Fingers crossed it all goes how it is meant too, and then we can start the fight to get a school close to us and that we think will suit him best.

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She did though also tell me on the phone that her boss thinks he will be best suited to a school for children with severe learning difficulties and we have been told this by several people recently which has been pretty hard to take.
I hadn’t really spent much time thinking about this but it was a rather heavy thing to take and made it clear to me just how hard he does find life, how challenging his behaviour really is and just how much I do for him.

As his mum I do everything for him daily and just get on with it, I don’t put much thought into how much extra support I give him compared to other children his age, but when I think about it, and see other children younger or his age it really makes things hit home. You see them chatting to their parents, shouting for their mum when they are distressed or want something, running about and playing with other children, choosing what to buy in shops, walking down the street beside their parents, turning around when they hear their name.. and many, many other things.

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It’s really tough, really, really tough.
When I heard this, had it confirmed by other professionals who have seem him on many occasions and really thought about how he actually is, it started me on a downward spiral.

-WeeOhana

2

DIS- week 4

I cannot get over how fantastically DIS is going. We went along expecting to be told that we would need to come back in a few months and to see if he was ready for it then, but we went and she said she was willing to try. I am so happy that she did.

We have now completed week 4 and have two more to go. Ad came along to this one as I was desperate for him to see how much he had progressed rather than me just telling him and he was in for a huge surprise.
Dylan moved from table to table fantastically today and even carried the item for two of the tasks from one table to the next. Which is something that he hasn’t done before.

Another thing that he did wonderfully was at the  second table she has been trying to encourage Dylan to put items into the ‘done box’ once he has completed the task and is ready to move onto the next one. She has been encouraging him to do this by aiding him in placing them into the box with a lot of hand over hand encouragement, but today he did it himself straight away after finishing his first task and then clapped himself! He then carried on doing this after every task he finished! It was absolutely amazing.

He also did a picture match, and then went on to match an object to a picture which was incredible, he loves doing the colour matching tasks and posting ones.


Dylan has come on leaps and bounds for her, so I am hoping that this will help when he is in nursery next September. With a very strict routine and 1:1 attention I can just cross my fingers he will settle into nursery ok.

We have the education board coming out soon to assess him(blog post soon about this)and get on the right path to ensure that he gets a spot in the school that will suit him best. We already have our hopes set on one .. so fingers crossed we get it as would be a huge weight lifted once we have his school sorted!

Follow the whole journey here-
What is DIS?
DIS Week 1
DIS Week 2
DIS Week 3

-WeeOhana

8

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

 

 

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Sibling Love.

My daughter always makes me proud, and I try to ensure that she is very aware of how proud she makes me. Especially when it comes to her brother.
Yes, like many brother and sisters they fight, dislike each other at times and want the same toy as what the other is playing with.
Though having a brother like Dylan is a lot more challenging than just the usual arguments and misunderstanding that happen between siblings.
It means that Amellia has had to learn a whole new way to play, interact and socialize with him among with many other things.

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She is currently waiting for him to say her name and asks on a regular basis do we think he will ever say her name. This is always a hard questions to answer because as much as we hope he will gain speech soon we cannot guarantee or promise this.
She longs to play duplo with him, kick a football about and get up to mischief together like you would expect from having a sibling around.
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She has adapted how she plays with Dylan, and if she really wants to get his attention she knows how to do this;will wave her hand in front of his face, or show him a train close by and this generally works. He also loves being spun in his chair that she has so she will often spin him in this and it is great when you can hear them both giggling away together. Its times I treasure and they really melt my heart. You learn to really treasure these moments as they are far and few between, so when they do happen they are just magical.
Sometimes though it just makes him angry and lash out. Unfortunately but also thankfully she is getting better at dodging his aggressive swings for her when she does something he doesn’t like, or want to do. She is starting to learn the signs for when he wants to play or for when he just needs left alone.

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Amellia really keeps me thinking positivly about all that is going on in our little family, yes sometimes things are really tough for her and we ensure that she gets time out to be a typical 5-year-old without having to worry about leaving if Dylan dislikes a place or whatever we have chosen to do that day but her understanding when Dylan gets overwhelmed by a place is absolutely magnificent. She will often say to me if it just me taking them to the park that she is ok with leaving if Dylan doesn’t like it when we get there.
I also really admire how proud of her brother she is, when we are out and she is talking to someone she will openly say about her brother having autism and people are generally shocked by how open she is and never quite know what to reply. She will then go on to tell them about Autism and how it affects her brother and that sometimes he will get mad, but he isn’t doing it to be mean, he just can’t understand you and doesn’t know how to tell you what he thinks.

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Yesterday she came home from school and nearly had me in tears.
She came up to me and told me that we don’t need to send Dylan to the school that we have seen for him because she is going to open a school just for children with autism. She is going to make it with a soft play room, sensory room, colouring and a room especially for Dylan with Thomas the Tank engine all over it.
Then she went on to tell us about how she will let them play most of the day so that they don’t get upset and she will try to teach them but if they get upset she will have an Ipad there for them to use to help to calm him down and they can then play letter games on it to help them to learn.

My heart melted.. My little girl amazes me everyday. She is so understanding, caring, loving and wants to just help in every way that she can.
When we explained to her that he will be a little to old when she has done she said that’s ok then mummy, because I can help other children like Dylan and he can come in and help me ❤img_4646

Dylan is so lucky to have a sister like her, and she helps him so much and wouldn’t ever be without him.
She tells me often that when I get older and I can’t look after Dylan anymore she will live with him so that she can keep him safe and make sure that he has the best life he can. She doesn’t want to get married or have any children so that she can always be there for Dylan when he needs her.

Simply put; I think he is the luckiest little brother and she is the most understanding big sister around.

-WeeOhana