2

What’s your advice?!

Dylan has his first appointment with the dietician coming up soon! 

I’m not entirely sure what to expect but if they can give us some advice on how to encourage him to move off this diet of toast, mince and rice crispies would be great!                                    

I don’t have any concern about his weight really as he is pretty sturdiy and healthy looking boy, but eating a diet that is very minimal isn’t going to be the greatest for his inside. 

We have to remember to do his food diary for three days before we go, but I’m pretty sure I could fill it in today and it would be right for then as we have tried everything we can think of to get him to eat other things!

To try and encourage him to have a more varied diet we have done from lots of messy play (which he really dislikes) too trying to sneak tiny bits in.. he spots it a mile off! At our first appointment with the CDC team we were told to do lots of messy play as your mouth is very closely linked to your hands with the feelings that they both feel.  

                                                 

We have persisted with the messy play, but he is still on dry pasta, sand and painting has recently been accepted but unfortunately that is about as far as he is willing to go at the moment. If we try him with things like shaving foam or anything even slightly goopy/sticky he will just leave the room and not come back in until it has been cleared away. 

It’s hard work, but at least he eats something and isn’t wasting away.                            

Fortunately what he does like to eat is very healthy too.. though I’m not sure how long you can eat mince meat for dinner before it gets bad for you as I’m sure all that iron isn’t the greatest!

Have you any hints or tips to try and encourage him to eat a more varied diet?                        

Help!

-WeeOhana 

1

Communication Under-Way!

Dylan has been getting on really well recently!
I was really worried that with Amellia being off school that he would be overwhelmed by her being here all the time as she is a rather noisy and active little one and with his routine changing up with no early starts and leaving the house to take her to school etc but he has done wonderfully!

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We have been trying to think of ways to let him know what is coming up, and what to expect during the day, with little to no verbal communication and very little and no understanding for what we are saying to him this was going to be a challenge. We first of all tried using PECS but he just had too much fun pulling them on and off the Velcro and even with actual pictures of the things he enjoys he couldn't link them, so we are thinking that when he is a little older these may work well. So what I decided to try next with him is to show him the actual item that we use for certain things, for example when he is given his much-loved bunnies he knows that it is bed time, and usually this works well and he will walk to the gate and wait for you to lift him up and do his night-time routine. Other times he just throws them away, but will generally still accept that it is time for bed. I am currently trying to teach him that when he sees a nappy it is time to lay down and get his bum changed, as he will be in nappies for a longer period of time than most children so when he is larger it will be a lot easier if he will lay down and not wiggle. This isn't going great, but we are getting there!
One of the things that he has really picked up on with a meaning though is the jingling of car keys and being shown them. When he hears you even more the car keys now he will generally jump up from what he is doing and go and stand by the gate and jump up & down and flap in excitement for what is going to happen next as we have been really working on making sure he enjoys whatever we are going out to do so that going out or the thought of going out isn't a stressful and upsetting thing for him. Unfortunately though this means even if I am trying to nip out by myself even if the keys make the slightest of noise he thinks he is coming with me and will be at the gate and then gets very upset by me leaving, though is generally quickly settled.
The other morning though he was a very cheeky little man! I had left my keys on the table and when we came down in the morning he found them sat on the sofa and started to show them to me and jingle them.. he got rather upset that it doesn't work both ways and that we couldn't go out at 6am! Even with his persistence jingling and running to the gate!
img_8925This though was fantastic as really showed to me that he knew exactly what it meant when he was shown the keys and heard their noise! Fantastic! It was doing exactly what we had intended and we had cracked some form of communication!
Now to try to keep going with the nappy one and he will hopefully pick up on that too!

-WeeOhana

 

 

0

The start of it all..

One of the first things that concerned me about Dylan was the fact that he didn’t respond to his name. Now, the normal age for children to start to respond to their name is seven months old, at this age I didn’t really have any concerns, minus him laughing and smiling late but it came in time so I just thought that it was me having high expectations after Amellia being a pretty advanced little one! Though whenever he started walking, running and all those fun things that occur once they are moving and he was still not responding to his name I started to get pretty anxious about why this was. He also had no response to simple requests or questions that children would usually love to respond to, like showing you what they are playing with, or asking them to bring you something to see.
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First of all, I questioned his hearing, but he would turn to certain things like the door opening, dropping of coins and many other things, but his name was something he just didn’t recognise or respond to at all.
Along with this he also tip toe walked everywhere and even when he was in shoes. At the start, I thought that he was just getting used to walking, but as time progressed and he was always walking on his tip toes and would even go over onto the fronts of his toes when stood still I really started to worry. This coupled with his lack of response to his name started the cogs in my burn turning a little faster on the panic front.

When we were transitioning from baby food onto finger foods he had a really strong dislike to everything that wasn’t pure mush like his baby food. He was on 6 months+ baby food until he was about one and a half, he just wouldn’t take anything at all with lumps in it and if he discovered a lump he would just spit it out and refuse to eat anymore. We tried really hard to encourage him to eat the lumpier food, but he then stopped eating it at all and just wouldn’t eat and obviously this is not good for anyone. He had started to eat crisps and digestive biscuits (still his favourite snack!) so I wasn’t concerned about the muscles in his mouth or throat because this was a worry when he wouldn’t eat lumps because we thought maybe he just struggled to chew them up or swallow them, but we quickly learnt from his select few snacks he ate that he could chew and swallow solider things ok. This then became a worry as it was obviously sensory related, so this was another red flag that had went up in my head.

He also had a huge dislike to any sort of feelings on his feet, he wouldn’t walk on the grass or sand and got very distraught by this. That was another thing, whenever he got upset, it wasn’t a ‘normal’ tantrum or upset. It would take a very long time for him to be able to calm down and he would head bang, and many other things to harm himself. Along with stimming whenever things were getting too much for him.
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When he was younger he used to babble a bit, and then one day, he just stopped. Nothing. No babbling and he has always had little to no eye contact.  Whenever this happened and everyone was still telling me that I was being silly, and that he would do these things in time I decided that I would go with the strong gut feeling that I had I would contact my health visitor.
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I was hoping that she would tell me that I was being silly, but I knew in my heart and head that this would be not be the case. She came over the next day and asked me what my concerns were, whenever I told her she asked had I been using google (who doesn’t nowadays!) and I said yes, I had, so she nodded and then watched Dylan.  After about fifteen minutes she looked at me and said that she was hoping she would come here and tell me that she would be back in three months and that she was sure he would have caught up to his peers by then but unfortunately this wasn’t the case with Dylan. She told me that I was right to contact her and she started to fill out a form, she wanted to get his referral to the children’s hospital done as soon as possible so that we could get him the help he needed.. and so started the whole process of waiting for appointments, worrying and overthinking every single thing.

-WeeOhana

0

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

2

Apps for kids!

e Are Launching Soon

Recently I have been asked by a few people what apps the kids use; so I decided to make a blog about it.
This one is about the apps that my son loves to use, I will do one shortly about what ones my little girl likes to use too!
The majority of these apps are free, or at least have a free trial for you to see if your children enjoy them! =]

Alphabet

  • Meet the AlphablocksBased on the Cbeebies T.V show. It teaches your child the sounds that letters makes.
  • Talking ABC- by Hey Clay. This app helps children to learn the alphabet and links an animal to each letter. It also has several mini games, point to the right letter, puzzles, who is it, memory game and a few more.
  • Endless ABCby Originator. This app is by far the favourite among with others made by them. You can choose from a huge range of words, it then jumbles the letters up and a shadow is left for where they belong. As you move each letter it sings the sound that it makes. When you have completed the word it then explains to you what the word means and shows you a short clip to explain it.
  • ABC Phonics- by Pink Fong. This app sings a little song about the letter you choose with many words in it that begin with the same letter. It then teaches you how to write these letters in lower and uppercase. There is also a mini game for each letter too!

Numbers

  • Toddler Counting 123-by giggle up. This app brings up a random number of items and as you click on each picture it counts them for you.
  • Endless 123-by originator. You can choose whatever number you like and it moves and leaves a shadow for you to move the number to. along with a few numbers either side of it. It then does a simple sum for what would create your chosen number. Then it will do a little story about the number too!
  • Lets Count- by Fisher Price. This counts 1-5 with lovely, bright and simple to count animals. It sings a lovely song too.

Colouring & Drawing

  • Dipdab- based on the Cbeebies show. This is a great little app where you get a short little animation with dipdab at the start and then you are given a dashed line to show you what to draw. Then your drawing is used in the next bit of animation.
  • Rain Cubes by unity. You are given a blank page and as you touch around the screen coloured cubes drop down and form a 3D picture.
  • Drawing Pad- You can either draw on a blank page or on a picture that you have taken. As you draw it plays a lovely little tune and when you stop it stops the tune.
  • Touch Free-by unity. This app brings up simple shapes which are white on a black background and plays relaxing music. You then draw over the white to complete the picture.

Games & Fun

  • Playtime-by Cbeebies. This is a wonderful app, it has lots of games on it from different programs on Cbeebies. All very simple, easy and fun!
  • Sago Mini- This is the maker of a wide range of apps. Vivid colours, fun and easy games. Our favorites by them is; Roadtrip, where you get to choose a car, pack a suitcase and drive down a road encountering lovely flowers, animals etc. Music box, you fly about in different forms of transport and when you click up high it plays the high notes and low for low notes from well-known nursery rhymes. Monsters, is where you get different shapes to choose from, you can then draw on them, add items etc to them. You then get to feed them, brush their teeth etc.
  • Totoby Dr.Panda. You look after a little tortoise by wwashing him, making him sandwiches, giving him medicine when he is sick etc!
  • Magic Tracks- by budge. This is a game based around Thomas The Tank Engine. It is like your own miniature railway track. You drive Thomas around and come across mini games and unlock other engines and items to place around your track!
  • First wordsby Tiny hands. This is a great app for them to learn a wide range of things from clothing names, shapes, food etc. You get one of the items at a time and have to match it to the same picture. When you have done this it tells you the name of the item!
  • Get Well Soon-by Cbeebies. This app teaches your children about going to the hospital, and learning about the human body.

Video

  • Disney Life£5.99 a month. Can be put onto ten devices. It has nearly all of the Disney movies, programs, cds and books on it. You can download them so that you can use them when you are not connected to the internet. You can also watch the Disney channels live.
  • Netflix- £5 a month. Again a whole range of videos and movies. You can also download the majority of these so you can watch them offline too!
  • Iplayer kids– This has all the cbeebies & CBBC programs on it. You can download these to watch offline and has many seasons for all of their programs on it.
  • StoryBotsMany short videos on her about the alphabet,numbers, shapes, dinosaurs, colours etc on it! Lovely simply videos and catchy tunes to aid with learning!
  • YT KidsThis is a great app as it means that you can leave your child to browse through many videos that are all safe for kids!

I hope your children enjoy these! If you have any apps that your little ones like I would love to hear about them and add them to their Ipads!
-WeeOhana

 

11

We can do it.

Something that I am finding really tough is that there isn’t a fix, some medicine, a magic cure or anything at all that would help Dylan to experience a ‘normal’ life.
I love my boy, my little buddy, my curly fro, chum, cutie, handsome little man; my son.
Though if I could take this all away from him I would.
This can’t be an enjoyable life for him, he can’t communicate with me or anyone else at the moment. He doesn’t understand emotions, boundaries and many other things.
He gets so frustrated he self-harms by head banging, hitting himself in the face, grinding his teeth, throwing himself on the floor, diving at the floor head first, He also has self stimulating behaviour a lot because this world causes him to have far too much sensory input, he can’t deal with it like you and I can.
He doesn’t enjoy going out to soft play, when we go for walks he likes to stay in his pram- his little safe space, he hates going to the shops and I now only go if he is sleeping, or can be left with my husband, safely at home.
He can’t stand change, we have to keep a very strict routine otherwise it is chaos. He wouldn’t sleep, in fact sometimes he manages to run on as little as four hours sleeps for a whole day and will keep this up for a week sometimes two untill we get him back and sorted.
What he enjoys the most is being in the house playing with his letters and numbers. Though it has to be all three packs of letters all spread out across the floor and sofa, with the numbers out as well. Generally the same letters are all placed together, and so help you if you move one that he has strategically set down. His new favorite is this set of barrels he has that are like russian dolls, they all go inside each other. The first time he found these, he spent the whole day playing with them and I must have put them back together and inside each other about 500 times, it was draining. He was happy though so I did this, and by the end of the day I was mentally exhausted. I had to celebrate and joyfully tell him what colours they were, and cheer him each and every time he opened one. This doesn’t sound too bad does it, it’s not, untill you do it for an entire day.
He has meltdowns on a daily basis, when he has a meltdown he gets so confused. He wants picked up, but he doesn’t want touched so he hits out, throws his head to try to headbutt, screams uncontrollably, when you put him down he head butts walls, he hits himself in the face and throws himself at the floor. He grabs at you to be picked up again and gets really mad if you don’t but then, when you do it makes him worse again. We have a beanbag and a soft play mat so that we can put him down and he wont hurt his head and extra tall baby gates so that he can’t escape and get outside to where he would be in a lot of danger as he has no sense of fear or safety. What settles him will change from day-to-day, we have lots of tricks that we try, but as a parent it really pains when you can’t just scoop your child up and comfort them.
When they don’t find comfort in their parent, in you, it’s very tough.

I love him with all of my heart, and I will always do anything and everything to help him. I will enable him to have the best life he possibly can and to live it to his fullest potential. I will fight all the battles for him that he isn’t capable of fighting for himself.
I will make this all work out ok. I’m not in denial I know it will be a bumpy road, I know it’s not going to be easy on me, my husband, my daughter or our families.
We can do it.

-WeeOhana

4

Clever bit of kit!

Spending time doing things together is really important! You all get to have fun together, bond and make those all important memories!
As a family we have to work hard to ensure that family days run as smoothly as possible. Dylan isn’t a big fan of many things that would generally occur on a day out. I find it rather disheartening when my little girl asks to do something and I have to redirect her onto a path that will suit us all.
Fortuantly it is something that she is getting used too and she knows that she gets to go out regularly with either my hubby or myself to ensure that she gets to do all the things she wants.

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The other day I became aware of a device that I did not know existed! I had to get my hands on it, I knew that this would make family days out a lot more enjoyable and less stressful for everyone. It would also ensure that Dylan would always have a distraction if it was needed and something that he could use to zone out and forget about what was going on around him. This is such a perfect time too as I am hoping that it will enable me to go out to a few more places with them over the summer as I will have this if Dylan becomes unsettled or is finding it all too much.

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What I have discovered is mobile wi-fi. It enables the iPads or any other devices that have wifi on them to link up to the internet to watch videos and play certain games! I can’t get over how clever it is!
Dylan relies on his iPad a lot, he learns many things from it with the educational apps (I am going to do a post soon on these) and he also uses it when he finds things are getting too much as a way to zone out. Enabling this device to do everything that he knows it can when we are inside the house will be a huge help outside of the house. Currently he knows there are certain things he can not access when he is outside on it, but when things get too tough, he really needs to listen to the gummy bear on repeat backwards, fast forwarded and every way else way possible.. this is really not something that is pleasing to many, but he enjoys it and it helps to settle and ground him. It is better than a screaming chil, trust me!

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I am hoping now that with his iPad enabled to do this that he will feel safe, and I can go out with them both by myself with a little more confidence that I will be able to keep Dylan calm and Amellia will be able to have fun and not have to worry about leaving places early if he gets upset!

-WeeOhana