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We are always on the look out for new and exciting places to take the kids and especially ones that Dylan will enjoy and be able to roam around with as little danger present as possible. When we heard about a new soft play opening and accessible park with sensory garden we could not wait to try it out!

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I took him one day after school while we were waiting to pick up Amellia and thought we would be able to fit in some time at the soft play and the park. We headed into the “big house” as Dylan decided it was and went through to the soft play.
I’d heard a lot about the soft play so maybe my expectations were just set to high, but as soon as we went through the doors to the soft play Dylan did not want to be in it. His problem was that one side of the room was a big window and out of this window you could see the park. He just kept running to the window and the door which was alarmed and looked very easy to set off so I didn’t want to risk that. He was getting wound up pretty quickly that he couldn’t get out and a meltdown was just a few minutes away, so I decided scrap the soft play lets just head to the park.

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Now the park I hadn’t heard much about, but oh my goodness, it was absolutely amazing. It had a great climbing frame which was wide enough for wheelchairs to go up and had a rocking boat that they could go into and you rock, some big long slides that Dylan absolutely loved because he is a huge thrill seeker! A bouncy floor, swings, wheelchair swing, hopscotch, drums, giant xylophone, giant spiders web and I’m sure some other bits that have slipped my mind.

Dylan really loved the sensory garden which had all the musical things in and really enjoyed playing them and having a little dance while I played them.

We really enjoyed the park and will be making a regular trip here, I loved how brightly coloured it was because it made it all so eye catching to Dylan and I really loved how inclusive this park was for everyone. I’ve never seen a park like this before!
If you live in the area or further afield and are looking for an inclusive park I highly recommended giving this park a visit!

-WeeOhana

7

My handsome little chap.

I’ve learnt how to view the world differently
To see it how you do
And through your eyes it’s a very scary place.
I will keep helping you to see the good
And promise to always do things at your pace.

I will always go with what I whole heartily feel is in your best interest
Not what others want me to believe is best
I won’t let them push me to do what they think is best.
You are my child
I have your best interest at heart, not them.

You amaze me everyday with your quirky little ways
Lining up your toys
Spinning in circles.
Blinking your eyes like crazy to some strange sounds
Watching the same 10 seconds of a video over & over again.
You repeat words and phrases until I repeat them back to you.
You can find letters in all sorts of things
Often leaving me puzzled looking at what you were staring at.
When we go out I hear you reciting the alphabet or counting random objects
It’s adorable, and helps you to regulate.

You are absolutely incredible
Everyday you amaze me
You try so hard to succeed
I am so proud of you
My handsome little boy

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Christmas time changes

Christmas time is upon us and I am so excited this year. Last year I just wanted Christmas to be over and done with and couldn’t wait to get the decorations away which is so unlike me. I’m so glad this year I am back to full Christmas love & excitement.

Christmas decorating and Christmas time in general is a little different in our house than it would be in most households. Dylan doesn’t cope well with change, for example I took one thing out of the living room to make room for a bit of Christmas and he has dragged it back in very single day since. We decorate slowly and the tree goes up last. This year we will be putting the tree up on the 16th, plenty of time to enjoy it before Christmas but not too long that all the decorations being taken off and lined up and sorted into colour several times a day wont drive me so mad that I want to take it down.

After Dylans birthday on the 9th I’m going to slowly start to add little Christmas bits around the house so that it is slowly changing rather than all of a sudden his safe space is completely different. I know he is going to love all the lights on the tree, but his love for collecting and lining up things that are the same he will just be in overdrive all the time.

We have a lovely little Elf in our house called Max, Amellia totally adores him. We have a pretty lovely elf in our house who doesn’t do all that much to be honest. He moves around and leaves little notes of encouragement. On the weekends he will leave some small gifts which are generally arts & crafts related to Christmas like paint your own decorations, santa letter kits and things like that. Dylan does not understand the Elf malarkey but it is loads of fun for Amellia.

Advent calendars are done different in our house as well, because lets face it give a number obsessed kiddo something with numbers all jumbled up on, he’s gonna open all the doors in the right order in one day and get very distressed if he cant. I open his for him and then give him the item from the advent calendar, this year we got him a playmobil 123 one as he is loving it at the moment! Every morning when I have given him a piece that has come in the calendar though he looks at me like I’m mad and goes and puts it away in the box with the rest of the playmobil and then carries on with his morning. I think when the 25th comes and I don’t give him a bit of playmobil to put away he is going be so confused about why this new morning ritual has changed but we couldn’t let him go without an advent calendar!

Both the kiddos Christmas plays are coming up and I really can’t wait to see them both. Amellia is all bizz because she is singing at the very start of hers and has been singing the song constantly for the past few weeks, I must say she does have a simply wonderful singing voice. Dylans will be adorable just seeing them all together and hopefully taking part in a little sing a long to a few good old Christmas songs. Amellia is really excited as she is coming along to see his too, it’s on her last day of school so she wont miss anything at all as we all know that is a day just full of chaos!

Hope you are all enjoying getting in the Christmas spirit and your kids are enjoying it too, even if it is in a different way to how you used to enjoy Christmas.

-WeeOhana

6

Understanding is impossible unless you have walked it yourself.

Having an autistic child is something that is impossible to understand unless you have walked it yourself.

The sleepless nights because they don’t sleep, and when they do your mind is going at maximum speed thinking of how to help them better tomorrow, what you can do that won’t cause a meltdown, if they will ever get a job, be able to live independently, cook, dress appropriately independently, tell you how they are, ask for what they want, say where hurts, if they will ever have a partner.. and many, many other things.

The worry when they won’t eat and have an extremely restrictive diet if they will be able to keep healthy on the select few things they eat. When they stop eating a certain food and you are left with even fewer foods, and they are losing weight and no one has ideas or provides you with help to get them eating more.

When they go into school in floods of tears clinging to you and you worry and stress through the day if they have settled, are they ok, will the school be honest with how they were, will they forgive and are they happy,

Buying new clothes entails turning the items inside out to see how they will feel to them and having to hunt out clothes that don’t have seams, and when they decide they like something and will wear it happily bulk buying them in every size to ensure that your child will go out with clothes and shoes on.

When you go somewhere they have enjoyed having your fingers tightly crossed so that nothing has changed and hoping it will be really quiet so that they can enjoy it and it won’t start a meltdown.

Will they ever make friends and have a proper friendship with even just one person. Be able to go to the cinema together, out for a walk, lunch, or even just have a conversation together.

How are you going to be able to cope with meltdowns when they are older if they are still lashing out, head butting, and how will I prevent them from self harming when they head butt the walls, hit themselves, scrab at their body, pull thier face..

Would someone else be looking after them better and providing them with better chances and helping them more than you are.

What happens if you end up in hospital and have to spend time there, how will they cope, who will look after them because no one knows them like you do and an even bigger worry.. what happens when you die, who will care for them like you do, love them and understand them like you.

The constant fight for help from services which are meant to want to help but show you the exact opposite.

The need to cuddle and protect them when they are sad, overloaded, having a meltdown but infact it just makes them worse and the only thing you can do is watch and ensure that they are safe and are not harming themselves.

Ignoring the stares, tuts and comments made when out in public and your child is having a meltdown and you can’t do anything to help them or stop it.

And the over whelming feeling of continuous guilt.

-WeeOhana

9

Leaps & Bounds of progress!

These past few months Dylan has been slowly progressing, but over the past month it seems to all be coming together. We have many words now which is absolutely incredible seeing as every time he has been seen by his pediatrican we kept getting reminded that not all autistic children talk and not to get our hopes up. He can request things like his iPad, juice etc, it’s amazing to see and I have got a lot of hope for the future now and I’m sure his language skills will continue to develop and maybe one day we will be able to have a conversation with us! It gives us a lot of hope and really lifts spirits.

In school they have started to use pecs to help him move from one place to the next, his anxiety is brought down a lot with these pictures and I am now running about like crazy taking pictures of everywhere we go so that I can use them at home with him too. I am hoping it will help when out and about with him so that we can keep him calm and hopefully enjoying what we are doing rather than worrying about what is to come next.

He is starting to try new foods, well he has licked a yogurt and they are trying to encourage him to try new things in school via pictures and are going to get me some to try at home with him, which is a really exciting prospect. Dylan’s eating has always been a worry for me, as much as the dietician says it is fine because he isn’t losing weight it cannot be healthy for him and is not ideal. I would love to be able to just pick him up something when out and about but unfortunately at this moment in time that isn’t really attainable as he doesn’t eat very much at all especially for dinners and lunch. Maybe one day he will eat a sandwich, now that would be incredible!

He has also started to interact a lot more with Amellia and the other children he knows. He will ask them for races using his makaton that he is starting to pick up and what is even more amazing is that the kids around us are so great too him. They understand him really well and it is so great to see them running around together and enjoying each other’s company. Something again I wasn’t sure I would ever get to experience with him.

Something he has started to really enjoy also is playing mario, he is learning how to control him and enjoys walking him around the map. Before he just used to hold the button and laugh as he fell off the edge, which is funny.. but finding something he really enjoys doing and playing is great!

Obviously he still has his hard times, but I totally adore him and he is simply wonderful. I will continue to encourage his growth and I truly believe give a child the tools and encouragement they need and they will progress in there own time!

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School Progress!

We are into the fourth week of school now and Dylan has quickly had a turn in feelings towards school and now loves it! It’s so beautiful to see, I take him to the door and he takes his teachers hand without a second thought and off he goes with a quick wave goodbye. The change in him is amazing and I can’t wait to see how much he grows over this school year!
img_9764He has always had a really restrictive diet and stopped eating anything dairy about a year ago. This week in school they managed to get him to lick some yogurt!! I know it doesn’t sound much and is a strange thing to celebrate but we have been trying for a long time to get him back on yogurts to make sure he has having at least something dairy! Now is to try and get him trying a few more foods and maybe someday soon he will eat something rather than mince for dinner! I’m really excited at the prospect but i am going to stay realistic and him even just licking a food or even touching one is a huge cause for celebration in our house!

Amellia has settled in even more now and totally adores her new school, they really are going above and beyond to help her and it actually makes me so angry when I think of how little her previous school did and when she is saying things about what they did and how her new school is doing it, it’s bloody ridiculous. I’m extremely glad we moved her and just wish we had done it sooner. She is coming on leaps and bounds, they really get her and support her. She now has a 1:1 provided by the school until the Ed psychologist can come out and assess her and provide the school with funding for her to keep the current one on. They seem to get one really well and I’m looking forward to go and see the teacher in October to see how she has really settled in and what we can do at home to help her keep moving forward!

-WeeOhana

3

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