5

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

7

Honest & Open

Something I have always found important Is being honest and open with my children at a level appropriate to there understanding.

Recently Amellia asked me where she lived when she was a baby, and I told her that we used to live with nanny & grampy when she was first born, she then went on to ask who came to the hospital with me and I told her that nanny did. She looked at me a little confused and said that daddy came with me to the hospital for Dylan.

I then told her that we met daddy when she was only a few months old and that we moved in to his house after she had turned one.

She looked up at me very seriously and I was wondering how I would answer all the questions she might have but she just said one simple sentence that just summed it all up perfectly. “Well that makes my daddy an extra special daddy then because he chose me and wanted to be my daddy”

My heart melted, she couldn’t have got it more right. 💝 Ad loves her and treats her just like his own, as do his wonderful parents. She has an incredible bond with them all and is totally spoilt rotten.

7

Dietician Disappointment.

Last week we had our first appointment with the dietician. I was very excited for this appointment and couldn’t wait for some new ideas on how to encourage Dylan to eat or at least even try more things!
At the moment his diet is extremely limited  and we have tried everything that we can think of possible ways to encourage him to try other things also to drink things such as milk to ensure he is getting all the goodness he needs to grow up strong and healthy!
We haven’t had much luck at all, and he is now starting to go off things that he used to eat.

We had to weigh out and write down what he had eaten in the past three days and when it was all wrote down it hit me with how little he really did eat. Every day breakfast, lunch and dinner is exactly the same with a variation on snacks and what he has after.. but by variation I mean three different things.
We are lucky because he does drink pure orange juice and apple juice, though he wont drink anything apart from them.

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Going in with high hopes and expectations for ideas of how to encourage him to eat more, drink more and live a little healthier and coming out with no new ideas at all on anything was rather disappointing.

She told us that his diet was extremely limited and that we had to try to encourage him to eat other things. (What did she think we had been doing!?) When I asked her how we could encourage him to eat new foods she just said to keep trying what we were already trying. This was without even asking what we were trying.

Something that she did do though was prescribe him a multi-vitamin powder type idea that has all the essential vitamins and goodness in! Though she did say in her next breath that she doesn’t think he will take it, so yeah. I have my fingers crossed that he will, but her lack of confidence wasn’t the greatest.

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We learnt something that we weren’t aware of too, bread has calcium in it! Well, the Hovis best of both contains calcium! If your little one isn’t calcium this is a great way to up the intake in their diet! =]

Fingers crossed we can come up with some new ideas ourselves to try to encourage him to widen his diet a bit!
If you have any tips please let me know!! =D

-WeeOhana

 

22

CDC Take #2

I’m really not sure how I feel right now, what thoughts are going through my head or how I’m even expected to feel. I just can’t pin it down to one feeling.. in all honesty, I’m feeling a lot of them all at once and it isn’t doing my head and heart any good at all.

We arrived 10 minutes before the appointment hoping that it would help to get Dylan settled before the appointment.. but boy was I wrong. He screamed the place down and continued to do so for the 15 minutes late that our appointment was too. The lady then came to get us and said she had heard him from when we had come in. (thanks for making us wait then!) We then went into the room with the other therapists and it all started to become very real.
When we went in Dylan was not a happy bunny, pulling us by the hand to signal he wanted to leave, screaming and standing by the door. Thankfully the speech therapist remembered that he loved pop-up toys so she brought this out to see if it would settle him. He settled for a little while then she tried to remove this to encourage him to try something else with another of the therapists there.. but he just wasn’t playing ball. He settled after a while with some coloring and posting games, typically he was very happy when it was time to leave.

As all this was going on, I was having questions thrown at me left, right and center. Well no, they were very good at making sure they didn’t talk over anyone or myself, but I think it’s because I was the one in the firing range it just felt far too much. She was asking if this was how he got on when he goes into new places, how he had improved and I told her with a smile all the improvements I had felt he had made and she half smiled and told me they were great. Unfortunately though they all veer down a very obvious path and not the path that you want your child to travel.

The first thing that we got ticked off her list of things to get sorted was an education plan. She said that she didn’t think he would cope in a mainstream school even with a 1:1. She said that she would worry about his safety and that it just wouldn’t suit him at all. So all the information for this has been sent off and we are just to await an appointment of when to go and see them for them to write-up a report.
If I was being honest with myself, I knew this was going to be the outcome. Though I was living in hope, denial and wishful thinking.

The next part did shock me, I knew in my heart and my head that he was autistic, it was blatantly obvious. She had told us at the previous appointment that what she suspected was autism but he was too young to say for sure; but she told us at this appointment that; yes it is autism and that he is severely autistic. She said that he ticks every box for classic autism. It was a shock how she described him as severe, but when you look at it from a realistic point of view, he really is. Everyday life is a real struggle for him, and clearly something he doesn’t particularly enjoy when you are taking him out of his safe spaces.

My emotions are everywhere, I have written this post still feeling numb, unsure and disconnected from my emotions, because right now I’m really not sure where they are.
Friends & family keep asking how do I feel, honestly, I really don’t know right now.
I’m trying to make it to the next day with a smile, trying to stop it from sinking in. I don’t know when it will sink it, it may be in a matter of days or months but I know when it does I wont be someone you want to be around. Well, more I wont want to be around anyone. I will hide away and more than likely my hubby will need to take time off work to help me through this.
It’s not a simple path that we are going to walk, I’m going to fall off the wagon and right now; it could be any moment.

It’s a huge thing, it’s life changing not just for Dylan, but for the whole family.

-WeeOhana

9

Sensory play outside! =]

It has been simply wonderful weather here for the past few days and we have spent lots of time out in the back garden relaxing and enjoying the safe space we have.

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We recently purchased them that wonderful little Smoby activity car that you can see, it is wonderful! Has a great sized slide on it, a wheel you can turn and it has a horn with several different noises, a key to turn and to make it even more wonderful the bonnet opens and you can put whatever you want in it! It also then comes away from the car for if you want to wash it or empty out whatever you have put in it! The reason we went for this activity car is because Dylan can get in and out of it himself and climb up and go down the slide by himself too!

Today I decided instead of putting the expected of sand into it, to put some soil that I had from planting my pepper plants into it to see what he would make of it!

He got stuck right in and really enjoyed it! He was shovelling it up and filling the plant pots up and then emptying them! He was having lots of fun and played with it for a long time!

He wasn’t keen on it getting on his hands and when emptying out the plant pots was very careful not to touch it with his hand and was always using the shovel when moving the soil about! He had lots of fun though and was happy doing this for a long time so I am hoping with a few more days of sun and playing with the soil he will start to touch it with his hands!

My precious little man, who means the world to me ❤
WeeOhana x

1

Learning Curve to friendship <3

Amellia has been working really hard on building up her relationship with Dylan. She understands that he is a little different to others and that he doesn’t enjoy touching, close contact or really playing with her. Though I’m sure you can see how this is very difficult for a five year old to have to understand, and to follow through with. This is especially hard for her as she is basically the polar opposite of Dylan!

She wants to shower him with love and care. She wants to play with him 24/7, kiss and cuddle him and have in-depth conversations about what they are building with the Duplo blocks.. but she has slowly learnt that this isn’t going to get her very high up in Dylans popularity list. When he was building she used to go over and try and help and he would get frustrated at her and hit out, I always found this very hard to watch and explain to her over and over again. She wasn’t doing it out of badness, she just wanted to play and engage with her brother like she would other children. Whenever she then came anywhere near him he would hit out, try to bite her, scream etc at her.. and he still does now but not to anywhere near the same extent. They are both learning how each other work. She knows that if she goes and does something he can’t explain to her he is happy by himself so he will shout or do something else to show her, he has also learnt that not every time she walks past him or sits near that she is going to interrupt what he is doing.

I have seen huge progress between them recently, like all of a sudden they have clicked. They understand each other that little better and she understands why he is a little different and has accepted that she needs to treat him a little differently. Friday, was a huge moment for them. We came down in the morning when they had both awoken and Dylan was pottering about and Amellia was waking up and doing some drawing on her ipad.. when Dylan tottered over to her and sat up beside her all of his own accord. She then handed him her Ipad by choice and showed him what she was doing. She knows he really enjoys drawing so straight away he started to draw, he then took his little hand and placed it on hers. The squeal of delight out of Amellia was just magical. She didn’t want to move and declared this day to me as “The best day in her whole life” This is something that she has been waiting for, for a very long time!
img_4845They then sat like this for the next ten-fifteen minutes swapping whoevers hand was on top, while I melted with happiness for my little girl. This is the connection that she has been dying to get from her little brother since he was born and finally her dreams were coming true ❤
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I had seen that the friendship was growing rather steadily recently, like something had just clicked. She seemed to know when he didn’t want fussed over but was very quick to jump in when he was in a playful mood or was doing something she could do along side him! She did a lot of running about the house beside him before he would even acknowledge that she was there, but now he is looking for her when he starts running about, its magical.

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The other day they had lots of fun out on the trampoline together and Dylan got very upset when she got off, so she then got back on and bounced with him again! Then before she left she handed him a bit of chalk to draw with a zipped the trampoline up so he couldn’t get off by himself! This showed to me that she understood his cry was for her to come back, she then found something to distract him before she left and she also made sure her little brother was safe and couldn’t get hurt.

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This was on Thursday, she had gotten into the car beside him, and as you can see by her face, she is being careful not to touch him too much with her arm! He stayed a minute or two longer then was ready to depart and go back to the trampoline. His most favorite thing in the garden!

They are slowly working each other out, but today has been a big step in the right direction. I couldn’t be more proud of them both. When you have your sibling who understands you and supports you, it can really help you along.  ❤

WeeOhana xx