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

Verbal; but not happy.

Recently I have been finding things really tough..
Obviously I am over-joyed by Dylan’s progress, being able to know the names of colours and to say the sounds for the majority of the letters in the alphabet, don’t get me wrong, that’s incredible.
I’m really proud that he can do these new things and that I can hear his voice, but it is still not communication with another human.
It’s also slightly odd to celebrate your child’s first word when it isnt a sterotypical first word. As parents you always discuss when they are babies and they are growing up.. ohh will they say mummy or daddy first and you always have a little sort of joke and competition about it. (Even though we all know dada is likely to be the first as it’s the easiest to say!)

My child’s first word though, was “brown” he loves saying it and he gets so excited and is really pleased with himself when he knows the colours of things, but its tough.
As a parent, your heart always flutters when your little one calls out for you, be it mum, mummy, dad or whatever name they have for you. It’s special and you will always recognise when its your child calling for you even if you are in a park with lots of children shouting it at the same time.
Don’t get me wrong, I will automatically recognise Dylan’s little voice even if it is just shouting out colours; I mean I don’t think I have ever heard a child be so excited over colours or the alphabet before, but he really loves them.
He loves me and I know that he does, he shows it to me in other ways but I still just strive to hear him call me “mummy.” In reality, no one knows when this will be. It could be tomorrow, or it could be months and months away.

Though I also feel very guilty for feeling like this, I should be so ecstatic that he can do this, its incredible clever, wonderful and I can finally hear his voice.
I shouldn’t be letting my own selfish needs to be called mummy cast a shadow over this moment. Unfortunately though I just can’t shake the feeling niggling away at the back of my mind.
I think also with some people saying things like “oh that’s great, he is going to be fine now!” is just really bugging me. How does this make him fine? Yes, he can tell you what colour your pencil is if he wants to, or what letters you have printed on your top, but he can’t tell you how he is feeling, what he wants, or what’s annoying him. It is still all a huge guessing game for me, one that is extremely exhausting mentally and physically.

I think one of the hardest things about this all is the unknown. There is no book, rules, or general things that they all do at a certain age or time.
Unlike with my daughter she had milestones to meet between certain ages and the majority of children do these things in the ages set down.. but Dylan and other children like him.. it’s all the unknown, there isn’t any milestones he should reach at a certain age it’s just all about going with him, working with him and whatever he does next we will celebrate greatly, but what is it that we will be celebrating next, no body really knows and I think the unknown is a very scary thing for the majority of people.

-WeeOhana

12

Guilt.

Something horrible has been taking control of me recently, and its guilt. An over load of guilt.

I can’t help but think of what has caused all this for Dylan.
Did my body mess up his growing?
Did I hold him too much?
Did I not hold him enough?
Was it the co-codamol I took when pregnant because I couldn’t walk?
Is it because he was formula fed?
Should I have tried breastfeeding?
Did I not stimulate him enough as a baby?
.. there is such a long list and I could go on forever.
I keep going over everything in my head, every single little thing.

In reality there is no single thing known to cause Autism, but I think it is natural as a parent to think over and over again what you could have done different that may have changed the outcome.
I’m trying to overcome this guilt as quickly as I can, but as soon as I think I am taking a step forward, I seem to fall backwards into this silly way of thinking.

Baby steps though, I don’t want to force myself to get over this and then it hit me like a ton of bricks in the future when I think it is gone..

Anyway.. small little post today about guilt!
Is there anything you feel guilty about?

WeeOhana x

 

 

16

Why telling Siblings is important

This is something that I feel quite strongly about. It is because when I was younger it was never explained to me what was going on, why my brother was treated differently, why he had his outbursts or why he treated people the way he does. Obviously back then I was very upset, felt excluded and very confused but now when I look back on how I felt I feel extremely selfish. That I really missed out because of not having someone explain to me that was going on and why he was being treated differently etc. Between me and my brother there is only one year and 8 days so we were extremely close in age and we were very bonded. I love him dearly and always will, especially now that I understand his ADHD.

Therefor I have made very sure to keep Amellia involved and updated with what is happening with her little brother. She is extremely tuned in with him though, She spotted before us things he was doing or that he wasn’t doing that she thought he would be doing. One day she compared him to a friends child who has autism, and asked if he would always be like her. She also got incredibly worried whenever he wasn’t talking and started to ask us when he would start talking or be able to say her name or anything at all. This was when we decided it was time to tell her that things were slightly different with him and that we can’t  put a time on when he will start talking or if he ever will. We are pretty sure that he will talk because he makes lots of different noises and sounds etc, but it is hard for her seeing her friends with brothers and sisters around his age talking, running about, going swimming together etc.

Whenever we explained it to her we kept it nice and simple, that he would learn in his own time and that we would all have to make changes. We didn’t say too much too her as we don’t have an official diagnosis yet and we also didn’t want to say too much and confuse her. So we told her a few things and then let her ask whatever questions she had and told her that whenever she had any questions that she could just ask us. The next day she came up to us and made me so happy she told us “mummy I don’t mind if Dylan is different, I love him anyway.” I had to sneak off to have a cry, it was just wonderful  an incredible thing for a five year old to have said.

I think it is incredibly important to tell siblings, they will then understand why you have to make differences for them, why there has to be changes and why certain activities or things they enjoy just aren’t as easy to do anymore and why when telling them off it has to done differently and allowances have to be changed.

We are incredibly lucky parents to have such an understanding daughter. If we have to leave somewhere because he doesn’t like it she is perfectly ok with that (as much as I hurt for her) if she has to wait till another day to go to the park because he is having an off day she is ok with that, if he wakes her up in the middle of the night, shes ok with that too. she will come downstairs and lay with me until we get him sorted. She really doesn’t get enough credit for how wonderful she is. I always try and make sure she gets to do the things she wants to do even if it is in a few days time, and that she gets to spend 1:1 time with one of us as much as possible so that she can go to the park and can leave when she is ready, so that she can go swimming, so that she can be a child and forget everything that is going on at home that makes her life so different to a lot of her friends.

This is the reason why I will always keep her up to date with what is going on with Dylan, so that she can feel included along the way and so that she can have as big an understanding as she can about him.
Special needs does not just change the child’s life who is living with the special need it changes everyone’s in the family.

We are all still getting used to the changes, his quirks, dislikes and likes, but we are doing it together as a family. Learning as we all go. I don’t think there has been a more relevant time to reinstate what my blog name stands for; Ohana means family, and family means nobody gets left behind or forgotten.

WeeOhana xxx

0

Guilt & pain

How have we all been?
I’m currently in bed, over joyed that my little one is back to sleeping through the night again rather than her waking at 3:30am fun she was doing recently! Unfortunately not a lot can be said about my sleep.. I seem to wake up every half hour and then try to get comfy for half hour.. Then the same routine again, and again! Which as I’m sure you are aware.. Isn’t fun! It’s leaving me tired and even more down in the dumps with this pain as I’m exhausted and in a great deal of pain try to entertain my nearly three year old!

I have restored to doing a lot of sticker books with her, or just sticking stickers on a page! She loves it, and will actually sit still and do this! She isn’t much of a grade A at sitting still.. But stickers seem to be one thing that she doesn’t mind sitting to do! It’s fab because it means she can sit beside me on the sofa and do it, so I’m semi comfortable.. And she’s not running about like a looney while I sit and feel useless because I can’t chase her about the house and so forth like I normally would have done! I have been quite impressed at how well she is able to find where what sticker goes and how precise she is at putting it down the right way and covering all the white! She will have several attempts to make sure she gets it just right! She’s such a wee star, fingers crossed she keeps it up when this baby comes 🙂

I’m starting to feel really guilty, but I’m sure it’s probably normal.. I’m in a great deal of pain at the moment with this spd, I have constant pain all night and all day, even if I take painkillers. So what’s the point in taking them if they will only make the pain go a tiny bit and will also mean that baby will be dependant on them and I will have an extremely grouchy baby! If they made me pain free I would probably be more willing to take them, but they don’t, I still can’t do much when I take them, so what’s the point! Anyway.. I feel guilty because instead of counting down the days/weeks until baby is here, I’m now counting down until the pain is gone.. I’m feeling more excited about the pain going away than my baby being here :/ I’m sure it’s normal for people who have suffered from this or some other pain … Or at least I hope because I’m starting to feel really mean! I’m really beating myself up about it at the moment and can’t seem to rid the thought from my mind, it’s terrible.. This is meant to be an exciting time where it all slows down because baby is coming soon and because you just can’t wait to have your baby! Time has slowed down for me because if no one comes round, I’m stuck in the house all day, I’m sick and tired of this pain, I literally am tired of this pain because it is preventing me from sleeping and I am constantly exhausted.. I’ll probably get more sleep when the baby is actually here and this pain has gone!

Also walking about like a flipping penguin and getting people looking at me funny isn’t the nicest of things.. Went to the shopping centre today to get some food and so forth.. Took me nearly triple the time to walk through the place than normal! Ahh!!

I have been signed off work, so there is so much I want to do around the house… Nesting is really kicking in! Wanna know the worst part about it… I can’t blooming do anything! Putting a wash on/sorting a wash is a very long processes at the moment as I have to stop several times because of pain! A task that would normally take 2 minutes now takes about an hour… An hour to sort and put a wash on.. Joys. I want to be sorting my little girls room and going through all the baby stuff to see if we need anything more and going out to buy all pretty paints and getting excited about painting new rooms… But I just can’t get excited about it.. Infact, it upsets me even thinking about doing those things.. Because I physically can’t paint, or sort.. And with going to choose the paint, hey that will be another trip out with pain involved! Though j suppose sitting in the house in pain, or going out isn’t much different!

I think it’s quite hard for someone who hasn’t been in this position to understand what it’s like .. To be going from being able to do everything, to near enough nothing. It’s actually really upsetting, and if I beat myself up about it and blame myself much more.. I’m gonna end up locking myself in a room till this baby is here and hiding from the world! I have a funny feeling though it’s going to make me even more protective of the baby and letting people hold him, just because it will have been such a long awaited thing to get him out so I can be pain free and because *fingers crossed* I’ll finally be able to do stuff again and will want to do it all after having felt so useless recently!

.. Anyway I’ll stop ranting as I can hear my little girl awakening and seeing as it takes me a long time to get it of bed.. I may as well start before she starts shouting!!
I hope your all better than me!
Love; WeeOhana x