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 

46

ToddleBike2 Review, Discount Code & Giveaway!

Many autistic children have poor motor skills and this makes many things challenging that you wouldn’t necessarily think about unless you were in the situation.
When I was offered the chance to try out the ToddleBike2 for Dylan I was really excited to see what he would make of it. The ToddleBike2 is really like a step before the very popular balance bikes you can get, it has four wheels and teaches the very basics of using a bike before having to worry about keeping the bike upright too.

The ToddleBike2 is aimed at children aged 18-36 months but can really be used by a lot large range of ages, Amellia loves Dylans ToddleBike2 and she is six years old! It has been tested up the weight of 100kg so your older ones can enjoy it too, without having to worry that it will break and it also has a 3 year guarantee just in case something is to happen.

IMG_0727.jpgThe ToddleBike2 is also extremely light and Dylan really enjoyed carrying it about for the first while and inspecting it. It took a little while of him carrying it about and playing with the wheels before he tried to sit on it.
With it only weighing 0.8kg it is really light to carry and would be perfect for taking out on walks and then when little one has had enough it is easily carrier for a parent!
We are going to keep to using it inside for longer for Dylan to grow his confidence on it but I know that it will be used a lot next summer when Amellia is out on her bike too!

IMG_1082Dylan started of sitting on it sideways and trying to shuffle along on the ToddleBike2 and really wasn’t sure how he was meant to make it move.

After some demonstration from his beloved Elmo and pushing Elmo about he then hoped on board himself and followed suit!

Look at that wonderful smile! Once he had is sussed he absolutely loved it, was on it all day and every time I put it into the kitchen he is bringing it back into the living room.
I really can’t wait to head out when Dylan is a bit more aware of his surroundings and the ToddleBike2 will go on many different surfaces with its lovely smooth wheels.

I totally love this ToddleBike2, when it arrived I was surprised at how small it was but do not let its size put you off. In fact, the size & how light it is really adds to just how brilliant this ToddleBike2 is. Another thing which I cannot believe is the little price tag to go along with how wonderful this bike is! It costs £23.95 and has free shipping to the UK & Ireland. Though if you aren’t lucky enough to win the giveaway I also have a 10% discount code to use here, the code is BLOG17!

Here is your chance to win a ToddleBike2 for your little one or a little one that you may know! You have to be in UK & Ireland to enter and you will have the choice of pink, red or blue. This will run until the 29th of November, Good Luck!!

 a Rafflecopter giveaway

4

Simple Sensory Fun!

I knew that the wonderful weather was sure to come to an end at some stage, so when it took a turn for the worst we decided to have some simple sensory fun!
I hunted through the house for things so that we could all enjoy, I came across some shaving foam and decided that now would be a good time to try it again with Dylan as it was about a year ago that we tried it before and he really hated it!
I wanted to try to add something to the shaving foam so that it would make it a little different, though we didn’t really have much!
I thought sand would be a great idea so headed out to the shed thinking that we had some left for going in the sandbox.. but we didn’t! Though we did have some very fine gravel left over from when we set up Pudges new tank! Perfect!

So; what you need to have this simple sensory fun in your house is;

  • Shaving Foam
  • Sand/fine grit
  • bowl to mix it in
  • animals etc to put in it if wanted
  1. Add the shaving foam into a bowl – As much as you want to use to play with!IMG_8567
  2. Then add in the sand/fine grit and mix up. – Again just as much as you want for how gritty to make it IMG_8572
  3. Finally I put it into a container that we for our sensory fun and added some animals to try to encourage Dylan to play with it and get his hands dirty!
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What I learnt from this simple sensory fun was that Dylan is still nowhere near ready for play with shaving foam, as soon as he touched it and it wouldn’t come of his hands instantly he was trying desperately to get it off!  I quickly wiped them clean and he shot off to the living room and into his tent for safety.
Amellia really enjoyed playing with it though and burying and finding the animals!

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This is real simple sensory fun, hopefully your little ones like it as much as Amellia did and don’t react with disgust like Dylan!

-WeeOhana

13

Sensory Play with Orbeez!

Recently I purchased some Orbeez to do some sensory play with Dylan and for Amellia to enjoy too!
If you haven’t heard of them before they are teeny tiny little balls when they arrive and then you soak them in water for a few hours and they expand up to 200x there original size! They are really impressive things and are really relaxing to play with if I do say so myself!

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I put his favorite toys in to encourage him to play with them. I thought that he wouldn’t be keen at the start but he loved them and dove straight into burying his Twirlywoos in them and uncovering them, then getting me to bury them again so he could get them out. We did this for quite some time and then he started to lift them out and look at them very closely!
IMG_7103I took this as an opportunity to go over his colours again and he had lots of fun shouting out which ones he knew and trying to pick them up as they are pretty slimy! We then also counted them when he was lifting them out!

IMG_7122He then was enjoying it so much he decided to dip his toes in and then stand in them! He really enjoyed it and had lots of fun!

When Amellia got home from school she also had loads of fun playing with them, she enjoyed putting her feet in them too and feeling them on her hands!

I would really recommended trying these out with your children for some sensory fun!

These are the ones that I ordered, but there are lots of different options to choose from! I think I am going to order him some of the extra large ones they do to see what he makes of them too!

-WeeOhana

3

Deliveries! =D

This week we got a few super cool deliveries!
One of them was a super amazing soft play mat that I had won in an auction on Facebook! If your interested in buying some soft play for in your house or business etc. I would really recommended checking out one of their auctions here!! They do them pretty regularly and there is always a bargain to be had!
When I saw this mat there was no way I was going to let it slip through my fingers!
It is the perfect size to fit in the little play corner we have in our room, blue and pink so means both my pair are happy and some wonderful stars stitched on to add a little magic! It is about the thickness of a gym mat, so wonderful for when the kids are throwing themselves about and works wonderfully as a head protector whenever Dylan decides to Do this.
Another winning feature on it for me was that it folds in half easily with a little grab handle, perfect for when we are having people over, or want a little floor space for train track building etc! Also very simple to clean, a quick baby wipe and it looks perfect again after any spills! I was more than impressed however with how quick I received this, I won the auction on Thursday, paid after dinner on Friday, it was posted on Monday and at my door on Tuesday morning! Wonderful quality, lovely customer service and super speedy delivery, I will be ordering some more shortly!
Here is a little video of Dylan enjoying dancing on the new mat to his favourite toy, BeatBo

 

The next delivery was one that took a little longer than I hopped, but boy was I pleased when it arrived! My sister sent me a link with what was the most perfect t-shirt I have ever seen. I then proceeded to look on the website and discover more and more amazing designs.. Luckily I had to be pretty controlled as the postage cost goes on weight of parcel and you can only have a certain amount in one parcel.. so I ordered us all one each of these t-shirts, but got a little disheartened when they didn’t do them small enough for little Dylan.. this didn’t discourage me though! I proceeded to place my order.. and discover that they did hoodies too! I mean .. check out this t-shirt!  (which I now have as a hoodie too)
img_6129So yes.. considering my blog name, and that this is also our favorite Disney movie I needed all of the things! I’m super impressed with how soft the t-shirts are, but I am very deeply in love with my hoodie.. fluffy on the inside, nice big hood, just perfect!
You can check out what they do here! They have three different designs each day that are at a cheaper price than the rest, but the others are also really reasonably priced and with some super awesome designs you wouldn’t find elsewhere!

 

-WeeOhana
x

3

Go with the flow!

Recently with Dylan I have learned that you really have to go with whatever is working for him that day. If it isn’t something that desperately needs done that day, isn’t important, or I can wait until my husband is home then I simply won’t do it if its something that he won’t cope with. Some people may see this as a little odd, that I’m letting my son control a lot of my life, but in reality; why would I take him to do the grocery shopping when hes having a bad day, just for him to have a meltdown in the middle of the shop. Which means he is very distressed, people stare so I get upset, he gets more upset as I get worked up trying to calm him so we leave. So; why would I put either of us through that? This is why most of my shopping is done online, or when my husband is home!

Today a friend of mine had a go with the flow light-bulb moment! She is a hairdresser and has been meaning to come over to cut my little mans hair for a while, his hair is a very precious thing to him and like a lot of autistic children he finds it very difficult when it comes to haircut time! So, when I went to the yard today she was there too sorting out her horse and was chatting away to me while Dylan very happily played with the shavings when she had a brain wave.

We decided why not have a go at cutting Dylans hair while he is really happy and relaxed in a place that he loves! She headed of to her car to get her hairdressing scissors, water spray and comb! He loved the water spray and played with this for a while to get his fringe wet and get him used to her! After doing this for a while I sat him on my knee to make sure hands and fingers didn’t get in the way! She snipped away and he was happy enough for the first few snips then he started to notice what was going on! With a quick few more snips it was done and after a few minutes he was happy to restart playing in the shavings like nothing had happened! It was over so quickly and he didn’t get too worked up which lead to him happily enjoying being at the yard again in a very short space of time!

He then went on to eat some of the horses food (which to me is bizzare seeing as it is nearly impossible to get him to eat any other human food than what he has already accepted into his very small selection of food he will eat), help me fill the hay nets and empty the wheel barrow!

All in all it was a very successful day! Fringe Trim, feeling lots of different textures and a happy little soul spending time outside in the fresh air! =]

It all boils down to.. pick your battles! Pick what is worth battling over and if it isn’t and its going to make everyone unhappy. simply do it when you get a chance! =]img_4144

WeeOhana x

 

 

 

 

 

 

0

Rice Sensory play!

Here is another simple, sensory fun idea for you to do with your little ones!
I bought a bag of rice from the supermarket poured it into our tub from IKEA that we use for our sensory play and dug out some stacking cups that we already had in the house!

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We had lots of fun pouring the rice out of the cups, it made lots of different noises when you changed the speed of the pouring and he had great fun using the other cups to fill up the big one to pour it out!
img_3783He wasn’t so fond of touching the rice even after playing with it for a while. Though he did let me pour it over his hands and he really enjoyed that! He did sit in the other sensory play that we did,but not the rice; I’m not quite sure what was different about the rice to the others that he wasn’t quite so keen on it! I  must try to work it out and then I can try and do a few more like the rice to try and get him used to it more!

So to end this post here is a lovely little video that makes me smile every-time I see it! What a handsome little man I have ❤
WeeOhana xx