3

Something I’m ready to be open about..

Something I haven’t really been open about on here is Amellia, and I suppose it was all just due to coming to terms with it all. We knew she had her challenges and that she was a very unique child but recently more and more things are proving challenging for her.

We changed her school as her old one was just not supporting her at all. In her words “they would shout at me for getting things wrong but never show me how to do it right. I love my new school as they don’t shout and show me how to do it properly.” Personally I am all about positive reinforcement rather than putting a child down constantly because they can’t do something.

When she went to her new school for a trial they picked up on so much and were absolutely shocked at how little her previous one had been doing. I mean, she was in for two hours for her trial and they had already thought of ways to help her and have referred her on further. To say I’m a little pissed at her old school is an understatement, but she is now moved and it is the best thing I have done.

She started and they had an assistant in the room for another child so we’re going to sit Amellia beside them to try to help her until she could get her own one, but this wasn’t working out too great as she needed too much attention for the assistant to split her time. They then sat her beside the teacher and same story she needed too much for her to be able to teach properly so the school have now funded her own 1:1 until she is seen by Ed psychologist to get her own one funded by the education board. I am so impressed.

The teacher and Amellia sat down together and made her IEP with attainable goals for her to try to reach by January. When I got this home I realised just how much]she struggles in the classroom; Things like listen 3 times day and be able to sit still for 5 minutes made me realise.

I know that she will continue to improve and come on leaps and bounds with all the support she is receiving and as annoying as it is that we have had to wait this long for it, I can not wait to see how much this helps aid her in her learning.

As a mum, yes I feel extremely guilty that I didn’t pick up on this before and notice early on. Thankfully it isn’t too late and we will be able to put steps in now to help her for the future!

-WeeOhana

2

Hearing Test, Hopes & Goals.

I’m not sure if you will have read how Dylan’s first hearing test but I came away from it saying I would never take him too another.
Roll forward 16 months and he was due for a review as they couldn’t get a clear reading last time due to him screaming and being disgusted by the whole situation of it all. They told me that they would recall him in 6 months time, it didn’t go well either but not quite so bad. Again they couldn’t do the full test as he would not cooperate they told me he would be recalled again in 6 months but they weren’t worried about his hearing they just now had to get a positive result for their records.
When an appointment came again for him to be checked again but in a different hospital I put on my big girl pants and took it by the horns. I wanted to get this green check on his records, rule it out and onto the next thing.

He wouldn’t let them look in his ears for very long at all, but the lady knew straight away when he was getting distressed and didn’t force it on him unlike the ones at his previous appointments. She said the one ear she got a look in looked a little red, but seeing as it was winter time this occurs to most of us especially if we have a cold. We then went back to sit and wait for the next part, thankfully we didn’t have to wait long as he isn’t ever very happy about waiting in strange places.

In the next room he had to sit on my knee while a lady tried to get him to concentrate on something while another played different sound etc to test his hearing.
As they were doing this I was thinking to myself about how if it was his hearing we could fix this, help him and right it all.
As I found myself getting caught up in those ideas I had to remind myself that if he does have a problem with his hearing, we could sort that out but it wouldn’t solve the many other things he struggles with daily, he would still be autistic too.

When she left the room to go and talk to the lady doing the sounds I felt like I had just been to a job interview. Making him sit still, hoping he would behave the best and do his best in the series of tests he had just done.
Inside I was panicking a lot that they would come back and say that some of his problems was because he couldn’t hear very well, and that he would need to get that sorted alongside everything else that was going on.
Another part was hoping she would come back and say it was his hearing and that she had the perfect solution and it would solve everything!

Though I knew in my heart of hearts this was never going to happen, I say to people that I don’t like false hope that I want to live in reality with it all and I rather everyone be honest and upfront with what they think.
This is true, but sometimes I can’t stop the little bright ideas my brain thinks it has sneaking in and bringing a whole load of false hope and joy. When I realise I’m being crazy or when I’m even proved that I am wrong then it is a whole load of heartache.
This is why I try to live in reality and not give a whole load of false hope because it just knocks you back when you are climbing.
Obviously I agree with hope, everyone needs hope and goals.
I believe in attainable goals for my kids, ones I know they can reach or are close to succeeding in so that we can celebrate together rather than discuss things they haven’t reached yet. Celebrate everything, some things that you don’t even notice your children doing are huge milestones for children like Dylan and others. It really makes you appreciate the small things, like when he looks at you, when he tries something new, when he touches something he hasn’t before.
I know its going to happen soon so one of my goals for Dylan is that he will call me mummy soon and know I am mummy and not just use the world, another goal which is going to take a lot longer but I have accepted this is that when I smile at him for him to smile back.

-WeeOhana

5

How I escape..

Yes ok, I’m late to the party. Recently I have fallen in love with Spotify.
My whole life I have been a huge music fan, music is my escape and always has been.
I can listen to the majority of music and enjoy it and appreciate the work that has gone into making the track and the lyrics!

I have spent ages trawling through Spotify and rekindling my love for all the music I used to listen to years ago, finding out that they have new albums and have changed their style a bit. My phone though is not enjoying the new love for Spotify and downloading all the music to listen to it when I’m out and about! It’s constantly shouting at me to delete stuff as it has no space.. that’s the bad thing about Iphones.. no micro sd card slot. New iPhone will be one with a bigger memory! Can’t wait till December so that I can get my new phone, come on contract hurry up and finish already!
musicHeadphones in or up loud in my car music always helps me. If I am happy I can listen to happy music and be all happy and sing along with it, if I’m angry I can scream along, if I’m sad, I can sing and cry along and there is a song for every single emotion! It can also totally decide my mood, if I’m feeling a bit indecisive and I put a happy song on then it generally perks me up a bit for the rest of the day.. unless it’s too happy then it just really annoys me!
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One of the features that I really love is that it makes daily mixes for you from a selection of music that you have added to your favourites and puts like music together, its great when you’re not entirely sure what you want to listen to but know the genre! It also does a discover weekly which has new music in it for you that is based on the things you like too! It’s such a clever little thing!
SpotiSorry, just a short ramble about my love for music and Spotify today! Hubby is playing the PS4 so what better way for me to spend it, listening to music on Spotify and blogging about it to keep my mind busy!
Dylan has his next CDC clinic next week where they are going to start his education plan and refer him on etc, so my mind is on overdrive these past few weeks!
Back to music though, If you don’t have Spotify I recommended trying it out! I wouldn’t be without it now!
You would swear I was bribed to write this.. I wasn’t. I just really love Spotify!

-WeeOhana