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.

39

Zimpli Kids product review & giveaway!

My kids love some sensory play, so when Zimpli Kids got in touch with me asking if my kids would like to try out a few of their products and do a giveaway I jumped at the chance.
When Amellia got home from school I told her that she had some items she had to do a review of for my blog and she couldn’t wait to see what we had been sent.

IMG_3123As soon as she saw the Gelli Baff she was busting to try it out, apparently all the ‘cool’ people she watches on YouTube have been doing it and they all love it so she already had high expectations for it! I had my fingers crossed it would live up to these expectations so that she wouldn’t be disappointed.

IMG_3137Does this look like a face that was disappointed?
She had an absolute blast, and really enjoyed herself. She thought it was absolutely incredible, I on the other hand was worried it would be very messy and a nightmare to clean. By some miracle though she kept it all in the tub and it came with a little packet of powder you poured into it to turn it back in to water which happened almost instantly when you put it in and a huge plus is that it is 100% biodegradable. It also smelt amazing and is even ok to use for kids with sensitive skin!
The downfalls of this product is that you cannot put your head into it.. and that she now wants every bath to be just like this one!

The next day we also used the Crackle Baff which Amellia & Dylan could both enjoy. They smelled really great and cracked & popped for a lot longer than I expected. Both kids really loved these too.

On Saint Patrick’s day we decided to go with the green theme and try out the slime that we had been sent seeing as it was green.
IMG_3888I wasn’t quite as impressed with this. Amellia had a blast, but to start with I used half the amount of water that they suggested.. mainly because I wasn’t sure where I would get a container big enough for what they suggested so I thought we would try it and just have really thick slime. It took it a very long time to get to a slime like thickness & was still rather runny, but Amellia really loved it.
Dylan refused to touch it.. he’s not that into messy play.

She played with it for a long time, and as the day was reaching an end.. it ended up all over the kitchen floor. Fortunately we have tiles.. it’s not something I would want to tidy off carpet. It wasn’t too bad to tidy thankfully! I threw a few towels over it and then stuck them in the wash after making sure it was all soaked up as it did make the floor very slippy.

All in all we really enjoyed the products and if your kids are into messy play I would really recommended trying some of their products out.
If you fancy winning some enter my give away that is running until the 4th April 2018.
This giveaway is only open to people in the UK & Ireland. Good luck!

 Click Here To Enter

-WeeOhana

 

*_* These products were sent to me free of charge to do a review & Giveaway. All opinions are my own honest ones.*_*

2

CDC Again..

Think this was our 4th, maybe 5th CDC with Dylan. When I was told that it would be a different paediatrician than my normal one who has seen Dylan since he was 16 months old I was a bit annoyed. I was told that they didn’t know when she would be back in so I obviously took the appointment that was offered to me to help to progress through everything.

Whenever we attend any appointment with Dylan we tend to wait in the car until two minutes before the appointment to go in. This is due to Dylan getting extremely worked up if we have to wait in a strange room with other people in, so we have found that this is the best way to ensure that he keeps nice and settled before hand. When we went for this appointment though they were 20 minutes late. Dylan waited a lot better than he ever has at the very start but then he started to get more and more anxious and after 10 minutes I was back to doing the usual of walking up and down the hallway trying to stop him screaming and to calm him. Ad went out to ask them what was going on and was told that at the start of every CDC they always discuss for 20 minutes. Now I have been to my fair share of CDCs and this has never been the case and was even more frustrating knowing that they were in that room beside the waiting room with the two-way mirror being able to hear and see how worked up Dylan was getting.

Eventually they came to get us and it was the new paediatrician that we hadn’t ever met, as soon as we sat down she asked such a ridiculous question especially seeing as they had supposedly been chatting about Dylan for the 20 mins we were waiting .. she started off with-

So, what are you concerned about?”


I just started to cry. Not huge sobbing crying because I was keeping myself together in front of everyone but I looked at her and replied with one word – Everything. 

I composed myself a little, but I did go on a little rant. I wasn’t mean, or rude I just expressed how frustrated I was by everything that is going on. To be honest I think I have every right to be frustrated and everyone in the room said at the end of my little rant that they could honestly understand why I was so frustrated.
Dylan was first seen at the children’s centre when he was he was 16 months old, he was referred at 13 months old. Even from the very first appointment we have been told that he is autistic and that he would need to attend a special needs school.
When we first went we were told that it is great that Dylan got referred so early as Early Intervention can make a huge difference to a child… but we have seen none of that. Not a single thing until very recently when speech therapy started 2 weeks ago.
We have also been told that the waiting for an official diagnosis is a lot longer than it is meant to be. You are meant to be seen and have the diagnosis within 12 weeks of doing the parent interview… we have been told that it will be a 9+ month wait.
I mean, we need this official diagnosis as much as professionals keep telling us that he is severely autistic my heart and mind are going through daily and sometimes even hourly battles over this. This is destroying my mental health, putting huge strains on our relationship and causing out family to suffer.

We were told that he may not get a place in a special needs nursery because the wait list at the moment is really long to get official statement done and we were told to not get our hopes up for him to get a nursery placement.
I mean COME ON!! We were apparently referred at the earliest stage possible to the education board so that we could get this done and sorted and not have to fight and wait for this like everything else, but now we have been told this. What the hell else am I meant to do?

Everything is just not right and something needs done about it.
Who can I contact for help?
I need this all sorted so I can then concentrate on sorting myself so I can be the best mother possible to my kids, to know how to help Dylan the best I can… This isn’t fair on our family and many others I know going through this.

Also, to add, Dylan needs a new high chair, he is too heavy for his current one and without being strapped in Dylan will not eat food. He does not seek food or enjoy food, but the NHS will not provide us with one or even help us to get one because it is classed as a restraint. Same as a car seat, its classed as a physical restraint but they have told me that they know Dylan needs one as he escapes from a seatbelt and that it isn’t safe.
Since when did a child’s safety & well-being stop being the main concern??

Sorry I went off on a bit of a rant… but I hope you can understand why, and if you know where I can go for support and advice to push these things further forward please do get in contact. 

-WeeOhana 

12

My Sunday Photo – 17.02.18

We were up and out early this Saturday morning to ensure that we could enjoy the day as much as possible. We headed off to Castle Espie and it was wonderful. We had lots of fun exploring, puddle jumping, looking at the views, enjoying the birds and all of the things Castle Espie had to offer.
Here are a few of the pictures I captured while we were out & about.

IMG_3032.jpgIMG_3002.jpg

 

8

Autism Assessment – Stage 2

Stage 1 of the autism assessment is where you are seen by a pediatrician who then refers you on to the next stage if they agree with the concerns and think that an autism diagnosis is necessary.
We got referred to stage two the third week of December which was when Dylan turned three. Unfortunately they cannot refer you to stage two until the child is three, which has made this a very long and drawn out process for us because Dylan’s autism has been so obvious since a very young age. Thankfully though for the stage two we only had to wait a few weeks.
I had heard about the stage two assessment from other people who had already done it and I was very nervous, I was expecting to leave in tears.
Basically its a parent only interview to get as much information about your child from birth to now. All the milestones they hit and which ones they struggled to reach or have yet to reach.

When we went in and as we were sitting waiting I was getting so anxious, and was really worrying about Dylan. When you go to this appointment you are not allowed to bring your child with you so I really struggled leaving Dylan. I can count on one hand the amount of times I have left him with someone bar my husband.
After a few comments made after we got back, I wont be leaving him with them again.

A lady then came to get us from the waiting room and she was very friendly and calming. She told us all about what would be happening and why we were there etc and asked us if we were happy to start and away we went.
At the start she asked us a lot about how Dylan was as a baby, how was the pregnancy, birth, what was he like, did he sleep well, did he hit his milestones for walking, smiling, laughing and what was he like when we weaned him. As I was answering them I was thinking to myself how obvious it was even from such a young age that Dylan was autistic, he smiled & laughed very late, weaning was hell food it still a huge issue with Dylan, I can’t remember how he slept.. but I think it was ok..I can’t remember being too exhausted? (haha!)
She then went on to ask us about how he is now, how he communicates, copes with change, diet, behaviour, friendships, understanding, dislikes and all that type of thing and after all the questions about his struggles etc. and then to end the bit about his development she then asked about his strengths too and his like.
I’ll not answer these all for you.. otherwise this blog post will end up extremely long.
Obviously it isn’t easy at all especially on the mind and your mental state to be constantly thinking about all of the negative things, what your child cannot do and what they really struggle with but I think that I now know that you have to give all this information and think about it that I have grown a little harder shell when being asked and I just answer it the best I can because I know I have too to ensure that he gets the help and care he requires and deserves.

She then asks about your mental health and if anyone in your family has any mental health issues, diagnosis etc and then after that she just has a little chat.
She told us that usually they ask how you will feel if your child does not get a diagnosis but she said that she wouldn’t bother asking us that questions because it is very obvious that he is autistic. She asked us how we think we will feel when we do get the official diagnosis and I think I am going to struggle.

I worked in a special needs school with many kids who have autism when I was younger and many who I have encountered think that this will make it very easy for me to accept and to just carry on with. They seem to forget that these children I worked with, they weren’t my own. I went home at the end of the day and so did they, I wasn’t emotionally connected to them like I am Dylan, my own son. Personally, I think it makes it a lot harder for me. I have experienced how autism affects children as they grow up, I know the struggles and what the future may bring.

We now have another 6-9 month wait for when they will see Dylan and give us an official diagnosis and get it over and done with then onto the next hurdle.
The lady wrote at the top of our one that we will take any cancellations and we just want to get the official diagnosis over and done with so that we can move onto the next part of the greving process.

-WeeOhana

 

27

My Sunday Photo – 04.02.18

I haven’t joined this linky in a little while, I’ve been rather bad to my blog and not shown it much love this year yet.
Starting from today I plan to get back to the usual amount of blogging & social media presence.
Here are some pictures from my walk at Mount Stewart last week with my hubby & son.
Hope you have had a good week & hope to chat to you soon! =]

IMG_2570.jpgIMG_2564.jpgIMG_2560.jpg

 

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