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

18

The Start of a Long Journey

I’m not really sure what to write, or how to phrase what I write really, I just know that I need to write it somewhere as a place to get it out and as a sort of journal for what all is about to begin. Currently we are just starting a long journey with our handsome son to see what is going on with him. Our first step is Monday when he is getting seen by the audiologist.

I’ve had my worries about him for a while, but it took me  until a few months to convince myself that I wasn’t just being silly and there was something going on. I then decided to book a doctors appointment and went armed with a list of my worries and concerns about what was going on with him. I felt like a crazy mum going in with a list, but the doctor there knows me well, was very welcoming and told me he was glad I had a list so that I didn’t forget anything. So after him checking over my little monkeys ears/throat etc we discussed what I was worried about, he decided that we needed to get the health visitor over to see him asap and to get the ball rolling to sort things out with him. One thing he said that really got to me was that “he will either progress from here, or start to go backwards.”

After speaking to my doctor I was hoping to have a weight lifted off my shoulders and him telling me that I was just being silly, not to rush him and so forth but as you can tell, thats not how it went. I came home and got on the phone to the health visitor to get her to come and sort us out. I had to wait a week until she was available to come over, and I’m sure a lot of you reading this are parents and you know how long a week feels when you are in panic and upset about your child.. little did I know the waiting time of a week was the shortest I would endure in this process.

When she arrived she asked me what my worries and concerns were and we got to have a good chat as he was having a little nap. My worries were.. I suppose still are!

  • He doesn’t respond to his name, no matter how loud you shout it. Though hears things like doors creaking etc. At the start I was worried he was deaf, until I realized it was more a selective hearing thing. (this is getting checked on Monday though as they have to clear his hearing before checking everything else)
  • He is 21 months and doesn’t say a word, he babbles a bit, but no words or sounds that mean anything to him. He used to say dada/dog etc and knew what they meant.. now they have disappeared.
  • He tiptoe walks, a lot. Like right up nearly as high as he can get.
  • Extremely fussy with the foods he eats.. Doesn’t really like lumps or bumps in his food.
  • Doesn’t brings toys over to show me/his dad or his sister
  • Isn’t keen on his sister sitting beside him, when she does he will try to bite her/pull her hair.
  • Very little eye contact, or response to emotions from others.
  • Head banging against a wall/floor (very upsetting to experience =()

As I told her these she asked me had I been on google and were these all big worries or just little things.. when I told her that I used to work with children with additional needs she started to listen a little more, and then when he woke up and demonstrated to her several of these things she then said that I was right to have a list written. She then plowed on to serious mode.. She told me that she hoped she would come here and see him and tell me that she would come back and see him in a few more months and that he would grow out of the things he did. Unfortunately she told me this wasn’t the case and she wanted to write down reports etc and get them sent off that night to get him on the list to be seen by the child developmental team as soon as possible. . This was at the start of July.

I have had a lot of time to take it all in, think things over and over again, worry, get upset, get annoyed and most emotions possible really. This is a real tough thing to be going through and to be left in the dark with when the ball will start rolling. I have his audio on Monday so at least that is something but I am yet to have an appointment from the child developmental team. I am going to ask them when I am in on Monday if they have a clue about time frame.. I think the not knowing when it is all going to start is the hardest.. Especially when I know that when the ball has started rolling it wont be straight forward and that it will be a long time after many appointments to know what is going on.

As his mum, I just want to make it all ok everything be fine and one day for him to wake and to have came on leaps and bounds. Be talking and everything.. but as the days and weeks go past, I know that wont be anytime soon. It hurts a lot, but I have to keep my brave face on, keep smiling and positive for my family.

One thing I have found through all this though is that you constantly seem to be on the look out for things that are different/worrying/wrong etc.. So I have tried to concentrate on the positive and enjoy what makes him, him. The way when he laughs, its from deep within him, he has the most wonderful and infections laugh and when you have discovered what makes him laugh you can do it 1000 times over and he will find it just as funny as he did the first time! How when you hand him something new he will inspect it in great detail, turning it over and over again in his hands looking at all the tiny little details on it. That he empties out the whole box of hot wheels to find the one with the red roof and then will grab any other one to have one in each hand.. then will go to the table and play with them for ages without anything distracting.. unless his sister goes near him! πŸ˜›  That he will pick the tiny bits off the carpet and place them in my hand and will do this until he thinks they have all gone! When he climbs up beside his sister and for the brief moment will sit beside her and how excited and happy she gets by this, and how at the park he will find a bridge, and go back and forth across this bridge the whole time we spend there chuckling away to himself. He does a whole load more that makes me so proud and privileged to have him as my wonderful son. I love him, and I always will, no matter what the outcome is.

WeeOhana. xx

 

3

Remembering the Good <3

Time just seems to vanish at the moment, since having my little man i seem to blink and a week disappears! It doesn’t seem like ten days since I last blogged.. more importantly it is nearly impossible for e to believe that he is 7 weeks old today… did I have a giant sleep through a few weeks after having him?!?

Some days it feels like he has been here forever, we have a lovely little routine (which generally works..) his big sister is completely in love with him and everything goes as smoothly as it can with a three year old and a 7 week old! I can’t wait for it to be the summer so that I can start taking hem both out for long walks and explorers as right now it is a little cold for him to b out and about for a long period of time..

Other days I don’t know how i cope. My three year old doesn’t listen or help and the little man just wants to be held constantly, which obviously just can’t always happen so easily whenever I am trying to entertain my little girl! These days I just want to scream, run and hide. I think that there is no way that I am going to get through the day.. but I manage! Mainly because of my fantastic hubby, who doesn’t always know how rough of a day it has been but will aways make me smile and give me a cuddle when he gets through the door from work! Then there is my mu, who I know no matter what that she is just a little phone call away and if i’m really struggling she will be with me as quickly as she can to help. Generally I just call and ask what is she up to and does she fancy coming round for a cuppa, because one thing I’m not to great at is asking for help or support. I feel that if i ask for this then I am admitting defeat and that I wouldn’t be able to do it all on my own. I like to think that no matter what happens I would be able to cope on my own and handle the kids, suppose most people like to know they can do it on there own, but I know I must work on opening up to people about how I feel and to ask for help when I need it rather than just hoping that they will see that I need it. Talking about emotions and how I feel about anything at all though isn’t a strong point at all for me

The main thing that gets me through the hard days, is remembering the good. Remembering how fantastic and well behaved my little three year old ca be when she wants to be. That I have a great support network full of family & friends;Also how lucky I am to have a beautiful loving family, a roof over our heads and full tummies.
Thank you guys ❀

So; Remember the good times, because hey, life would be too predictable if we didn't have the bad.
What do you guys do/think to get you through the hard times?

WeeOhana x