1

School Fun!

This past week has been all about getting into the swing of being up and ready early on and trying to work out the best time to leave to get to the schools at the correct time and still be able to park! We have got a hang of if now and are ready to rock this school year!

Amellia has been going in fantastically and is absolutely loving her new school! She told me that she wishes there was no weekend so that she could go to school everyday. On Monday she did have a little cry going in but the teacher came over and chatted to her about her coat and then took her by the hand and they headed in, I think after the weekend she was just thrown a bit, she really strives off a routine so once she gets into the swing of it again she will be grand.

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Her changing school has really been one of the best things I have ever done. My only negative about it is that I wish I had done it sooner. This school is providing her with so much more support and help than she ever received at her previous school. They are also keen to get everything else rolling to be able to provide her with even more help and support. She got 20/20 on her weekly spelling test and was over the moon, we are super proud of her and even more importantly she is really proud of herself and was so excited to tell everyone.

Dylan still isn’t really loving going into school, they have been trying putting him in a buggy to get him to the class as they can’t lift them Incase they were to trip and fall and cause the child to then get an injury which I completely understand. He too found it even harder on Monday and I reckon that is because he had been off for the two days and had got back used to that, but hopefully soon he will learn that school is great and he gets those two days off to be with me.

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He seems to be a bit hit and miss with how he settles once in the class. One day it only took him 15 minuets but then the next day again he was back up too taking a long time to settle so it really is a take each day as it comes type of thing he always comes out happy and smiling when he sees us so that makes it a lot easier, not sure I could leave him if he was coming out crying too!

Hope your little ones and you are settling back into the school routine ?

WeeOhana

3

I hope it gets easier..

Thursday was the first day for both my kiddies and they couldn’t have had more opposite experiences to the whole school thing.
Amellia absolutely loves her new school, on Friday morning she was dancing in my car with excitement before going in (which you may have seen on my insta story) and she has said that she wishes the weekend was only one day so she didn’t have to wait to go back to school. I just hope she continues to love her new school, they are offering her so much support and that is bound to help her settle and enjoy school more.

Dylans experience was the complete opposite. When we were walking down the hallway to his classroom he was fine and waited for his friend to catch up with him and I was starting to think it was going to go really well and he was going to love it, but as soon as we turned to walk through the door he would not go through and climbed up me as quick as possible while spontaneously exploding.
I carried him in and tried showing him some of the fun things they had out to play; sand, colouring, paint but nothing would settle him so they suggested putting him outside into the playground to see what he made of that. While they hurried him outside they told me to go. . as heart-breaking and as much as I really didn’t want to leave I couldn’t just ignore what they told me because in reality they have done this before and know what usually works best.
The parents then had a wee meeting to get to know some of the staff in the school and what they could do and provide for the children. After 45 minutes one of the classroom assistants came along to tell me that Dylan was settling for 5 minutes, remembering and looking for me and then settling again. After another 15 minutes they then brought the kids back to us and it was time to go home. As soon as he saw me he just kept repeating “mummys car” over and over again, he was more than ready to go home.

The next morning I woke up too carnage. Dylan had decided that doing a bit of poo art was the right thing to do, normally he shouts in the morning which wakes me up but he decided not to alert me and have a bit of a dirty protest and wake me with the smell. It was absolutely vile. I had my fingers crossed that the smell was going to be linked to something secured in his nappy but no such luck. I’m still scrubbing at the stains that refuse to budge! As soon as he saw me he started shouting “no school” over and over and over again.
I got him cleaned up, brought him downstairs and calmed him down. Amellia went to school dancing and singing then it was time to take him to school. After getting part of his uniform on I gave up, imagine wrestling with a alligator to put clothes on, Yeahh.. that’s why I gave up after he was decent.
The whole drive to the school he was going crazy in the back of the car, trying to undress, banging his head, hitting his legs etc.. I was waiting for him to fall asleep he was getting that worked up, but he didn’t.
Pulling into the carpark, walking to the class he was just going absolutely berserk. I had given myself a pep talk that it would be ok, they know what they are doing.. but it didn’t work.
They more or less had to remove him from me finger by finger. He was clinging on for dear life. It was absolutely horrendous. I just wanted to scoop him up and run away and never look back. I ended up in tears as they took him from me, it was such a horrible experience.
They came down to the room where we were meeting other members of staff after 40ish mins and said that he was doing the same as last time settling and then remembering again. This time at least when they brought him back to me he didn’t seem quiet as distressed but was busy shouting bye to everyone because he just wanted to be gone. He fell asleep as soon as he got into my car, which is only something he does when he is really worked up so that sort of summed up the day for me.

On Monday they are going to see how he gets on and have said that they will text/call me when they need me to pick him up. I’ll be sure to let you know how the next week goes.. at least on Monday I can sing to them “It’s my birthday, I can cry if I want too” so I wont look quite so bizarre crumbling into a heap on the ground in tears.. maybe that will make me look crazier actually.. oh well.

Wish me luck!

2

My child, my choice.

With Dylan starting school recently I have had a lot of people giving me their opinions on something which I feel strongly about and tell them before they even start with the back and forth.

My child, my choice.

I don’t agree with putting my child on a bus to and from schools. He’s three ffs. I wouldn’t put a neurotypical child on a bus even if it was a specific one for the school so I’m defiantly not putting my neurodivergent child on one.

People argue that it gives me more time, but I would rather do what is best for my child than what is best for me. I’m pretty sure that’s normal for parents.

I hear things like oh but everyone else does it.. I’m not a sheep thanks very much, I think for myself and what benefits my family the best. Also, just because everyone else does it does not mean it is right. Many things are questionable that “everyone’s does.

Not long till he starts nursery now, where did the time go!? They grow up far too fast and with them both in school now I know the years will fly by even faster 😦

8

Final Diagnosis Appointment.

When I got the letter through the door with the date for Dylan’s final part of his diagnosis I was overwhelmed with emotions. I cried instantly, with happiness that we finally had got a date after waiting all this time, with dread about it being final and what ifs. Thankfully it was for the next week so I didn’t have too long to wait with all these emotions flying around in my head.

I had asked on a local autism group on Facebook about what I should expect as I was pretty clueless to what would happen and wanted to at least be a little bit prepared, and I’m so glad I did ask. I was told what to expect and that the place I was going to was pretty run down and when we pulled up to it I couldn’t believe quite how run down it was. We managed to get parked in the car park which had very few spaces with the majority full and had a little pep talk about how it would be OK whatever happened.

Before we got into the building Dylan was already pretty unsettled and I was worried as had heard from a few friends that if your child isn’t compliant they will rearrange another date for you to come up and get them seen again, which obviously I really didn’t want to happen.
We were met by two lovely ladies who showed us to a waiting room which had a few toys in, typically all the ones Dylan picked up or showed a little interest in didn’t have working batteries in so this annoyed him more and me. I thought they would have ensured that the majority did have batteries considering that they are fully aware of the children who come to the clinic sometimes have a low-level of understanding. Anyway..

After waiting for about 5 minutes they came and got us and told us they would take Dylan into a room which we could see into through a 2 way mirror but that if he wouldn’t settle for them they would get me to come into the room with them and see if it helped. While we sat and watched they tried to get Dylan to engage in play with a shape sorter and some sensory toys but he just kept putting them back where they came from and was getting more and more wound up, until they got a pop up toy out. He loves pop up toys so this settled him a little bit until they tried to take it away and he just kept hugging it close to himself  and throwing away any other toys they offered him. They then asked me to come in to see if this would help settle him after having him in for 5 minutes, I looked at Ad and said I think we will have to come back..

I went in and he climbed onto my lap and was still pretty distressed by everything that was going on, one of the ladies even tried to tempt him with Play-Doh which is usually one of his favourite things but he just got madder. I had been in the room less than ten minutes and she said, “we have enough evidence now, if you want to go back out and wait” I was shocked but also super pleased that despite him not playing ball they managed to get all the information they needed and in such a short amount of time.

He was not for settling after all that had just happened and being pushed to try to settle, but the ladies came back in quickly enough and told us that they had enough evidence today to give Dylan an autism diagnosis, after this Ad took Dylan out of the room to try and calm him and so that I could chat to her and hear all the information she had to offer.

They offered for us to come back to chat without Dylan but we decided it was best if they told me then pass the information on because let’s be honest the place was a 45 min drive away, I don’t know anyone I could leave Dylan with for that length of time.

They have referred us to get support from others, are going to provide us with a few courses to go on so that we can learn as much as possible about everything that is going on and will send the report out with all the information about what they had found today in approx 6 weeks.
We then headed back to the car and Dylan calmed down when he was back in a familiar place safe in his car seat.

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13

The fight for a school place!

We were told from early on that Dylan would need to attend a SEN (Special education needs) school. This means that we started the process to get a school for him at the earliest stage possible. Despite starting this process as early as possible it was still extremely stressful and I still can’t believe that this is still allowed to happen year after year.

We had a lady come out to the house to observe Dylan and ask questions, loads of reports that had to get sent off and heart wrenching forms to fill in.
After doing this all I was hoping that we would be told a date when we would know what school he was going to and that I could leave it up to the board to sort out without calling and hassling them. This was not the case at all.

As I’m sure you are aware for kids in mainstream they are told a date that everyone will find out what school they are attending, yes this can be stressful because sometimes you don’t get the school you wanted. I know how that can be as it happened with Amellia, so how come this can’t happen for SEN kids too?
I personally and I know many others feel that it is in fact more important for SEN kids to find out early on which school they are going too so that they can visit it many times before hand, drive the route to the school, get used to the feeling of the uniform, meet their teachers and many other things.

After many phone calls over the past few months to make sure they had got all the details they need and chasing up others who hadn’t passed on what they needed and having other professionals call to ask what was going on with the whole process it was starting to get very close to the end of term and the education board close whenever schools do so this sent me into a little bit of panic mode.

I called them and was put on hold for 30 mins and then they hung up so I called back and after another 30ish mins wait someone answered the phone and said “Special Education aren’t taking anymore calls today” then hung up again. Now, this was at 10:30am in the morning. So I decided to carry on with my day and try and forget it and call again tomorrow, though obviously it wasn’t really an easy day.
The next day they then told me a different number to call, who then told me another number to call and I must have been given about 6 different numbers and ended up going round and round in circles. While making all of these phone calls I was also running circles after my crazy pair and sorting them out too, eventually I got through to someone who said they would check on the computer .. they then told me they would call me back tomorrow.

She didn’t call me back and it was then the weekend.
They got back to me during the next week and offered me a place in a school I hadn’t even been to see as I was not advised to go and see it, so I told her this and she then tried to claim that the school that was my preference was over 20 miles away from my house. I told her this was not the case and she didn’t believe me after checking my address several times, so she said she would call me back and look it up properly. I decided to do a quick check to see and it was less than 4 miles from my house. When she called back she told me that it was still showing up as really far away, but that she could offer me a different school that I had mentioned I had seen and liked. I was over the moon, she told me I would get the paper work in the next few days and I couldn’t wait. When the paper work didn’t appear after many days I was starting to wonder what was going on. I decided instead of doing the whole going round in circles thing again I would phone the school and ask if his name was down and was he afternoon or morning.

I phoned the school just for reassurance and I ended up in floods of tears, I felt like a complete twat but they were so lovely, supportive and understanding on the phone which was amazing and I apologized a lot for crying. They voiced their opinions on the situation and said they would do all they could to help.

I phoned the education board and said I needed to talk to someone now, but they then told me they didn’t handle placements for nursery so I had to call someone else and after lots of being put on hold they told me they had already sent the letter to the school a good few days ago and on phoning the school back they said that this would not have been the case as they would have already received it. They then told me to call back Monday to see, so I had a whole weekend really fretting about what was going to happen on Monday.

I called the school on Monday and had a long chat with them about what had been happening that morning but they still had not received a letter so she phoned the education board to ask what was going on and why was this allowed to happen to parents as I wasn’t the only one and thankfully she has secured a place for Dylan.

I am over the moon, but can not believe all that we have been through these past few weeks and now my mind is all over the show with absolute delight and such a dump of emotions.

I don’t believe that this is allowed to happen year after year to so many parents who are already going through so much.

2

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