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

8

Regression :(

Dylan has had a rather large & pretty upsetting regression recently.
He is finding anything outside of the security of his home a huge challenge.
Things Dylan used to really enjoy have become nearly impossible for him, and the hard thing is we have no idea what started this regression and what has made him so scared of being outside of the home.

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Parks have always been a little bit of a struggle for Dylan, but he used to be able to last about 15 minutes before he would start showing signs of distress and the need to leave, and this was ok. We could generally distract him and get him to stay for about 20 minutes which then meant Amellia got a nice amount of time to play too, but now its as soon as you even go into the car park.
You pull into the car park and he can see the park and this is a park that he has been to many times before so it isn’t a new environment that is setting him off and he just starts screaming and lashing around in his car seat. When you then take him out and set him down he is inconsolable, and because he doesn’t have any understanding to what you are saying to him it feels like an impossible task to help him understand that the park is fun, safe and you can enjoy it.
I can understand how this must sound crazy to most parents, I mean a child not enjoying a park it even seems crazy too me, how can my child not enjoy the park?
I have to teach my child that the park is a fun and safe place, that i itsn’t somewhere to be feared.
What makes it really hard for me to understand and to see is that if you walk to a park when he is in his pram he is trying to clamber out of his pram as is desperate to get out and play but as soon as his feet touch the ground when you get him out he just crumbles and cannot handle it.

Somewhere else that Dylan used to really enjoy going to is a little Mums & Tots that I go to that is just for children with additional needs. He used to love it, would run in most times sometimes he would have a little fuss but then would head straight to the ball pool and would spend the time happily pottering about doing whatever he fancied.
As of recent this is not the case at all. As soon as you pull into the car park he is screaming in the car and is not happy. I settle him down by letting him into the front of the car and he then pushes all the buttons and we head in.. as soon as the doors open he is straight on the floor screaming and giving off.. you would think I had taken him to a torture chamber and not a place he used to love.
Fortunately I don’t feel just as judged here as I would anywhere else. Many here understand and are very supportive, and I really think key to this all is making friends and chatting to people who are in the same situation as it really is an extremely hard one to understand unless you are in it too.

His favourite place to go used to be up to the horse where he loved getting involved with mucking out, making up the feed and just being around the horses, now he will just lay on the floor screaming and it is really horrible to watch, somewhere he used to really love and is so eager to get out of the car but as soon as he does something just stops him from being able to enjoy it.

I just wish he could tell me in some way what is going on, what is stopping him from enjoying these things and how to help because right now I feel pretty useless.

-WeeOhana

3

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

0

How To Make Your Own PECS!

The other night I made my own PECS (Picture Exchange Communication System) for Dylan!
There are several stages of PECS, for the moment Dylan is on stage one as he has just started using them! PECS is a form of communication that is used with lots of children on the autistic spectrum but can be used with other children too.It is where they learn to relate pictures to the items that they want.

I have seen lots of people who make these online and charge a fee for doing it then send them to you, I was very tempted to do this until I thought about how often I would need to order new ones as he got new interests, foods he likes etc. So I decided to have a crack at making my own and it really wasn’t that difficult! Took a little time to get all the things together and work it all out, but I did and I must say I’m pretty proud of myself with how they turned out =D So I am going to show you how I did it and what I used so you can make your own too! If you need any extra help/advice etc drop me a comment and I’ll be more than happy to help! =D

I already had a printer, which is the Epson Expression Home 322. I have had it for a while though so you may be better sourcing your own printer! Mine isn’t a very fancy printer but does all that I need and was a very friendly price! I then sourced a Laminator (Amazon.. my favorite place for finding everything I need/ want ;]) it wasn’t a fancy all dancing one, just one with good reviews and could do exactly what I wanted! (Click here to view it) Along with this I also ordered 100 Laminator pouches.. I’m not entirely sure why I ordered 100.. but when I see a good deal I can’t resist! ;] (Find them here) I then needed a paper-cutter as I wanted all the edges to be straight and nice! (This one!) and the last thing I ordered online was some Velcro! (Here) You will also need some paper and few bits of thicker paper too! =]

Now, I am going to try to do this in a step by step stages so it is easy and clear to follow! =] I’ll try and not waffle as we know I do get carried away sometimes! 😀

  1. To start I made lists of what I wanted to make PECS on. I started off by just doing two, Snacks and TV Programs then thought of nine of each that Dylan liked and wrote them down!
  2. Next I searched online for clear and simple versions of these images! I found when I searched to put the words “White Background” after whatever I was searching as it means they won’t get distracted by looking at the whole picture
  3. I then made a folder on my laptop for each PECS board and save the nine images of each topic into the correct folders
  4. After finding the nine images I then went into the folder and selected them all. You do this by left clicking once on the first image then holding shift and left clicking again on the last picture
  5. When they were all selected I then right clicked on the images and selected the option print, which opened a pop up.
  6. When in the pop up I scrolled down the side of it which gives you the options of how to print the pictures until I got to one called Wallet. This meant that all the pictures could be printed off on one sheet of paper and would all be the same size!
  7. Then I used the paper-cutter to cut them all out. This took a while for me as I liked to make sure they were all exactly the same size! Very simple to do though with the paper cutter recommended above as it has a built-in ruler! =D
  8. I then put them into a laminating sheet with a good distance between them so that they would all seal correctly and wouldn’t peel once laminated.
  9. Once the PECS images were done I left them to cool while I laminated the thicker paper that I would be using for the background!
  10. I then cut out the images again, making sure I didn’t go to close to the image as I didn’t want the laminate to peel off them!
  11. Next I stuck 6 of the Velcro dots onto the piece of thick paper all evenly spaced of course ;]
  12. In the middle of each of the PECS images I then stuck the other side of the velcro dots on. (I know I said nine but have only put six on the page, this is so that you can change them about, or remove some and put the other ones on when things aren’t available!)
  13. Admire your work and feel very pleased with yourself! You have just made some PECS for your child which will greatly improve communication and hopefully make meltdowns less often as your child has a way of telling you what they want when they get used to the PECS =D

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These are the ones that I did,and I would love to see the ones you have done! Especially if this step by step has helped you! =D
I wish you all the luck on your PECS journey! =]
Also remember if you have any questions on how to do this etc, Just ask! I’m more than happy to help!

WeeOhana xx

5

Sensory Pasta Play!

This morning we woke up to a cold and wet day! Horrible, especially when I have two little ones to entertain as school is out for half term!
I was trying to think on my toes of what to do with them that was a little different to the usual coloring or toys that we have! I decided on something sensory to try out, hoping that if my little man didn’t just dive in he would copy his sister and at least give it a try!

I hunted in the cupboards to see what I could find and I hunted out some pasta! Some sensory play, that isn’t to messy and wouldn’t stick to my little mans hands which is something he really doesn’t like! I had some swirly pasta and then i broke up some pasta sheets into a bowl.

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I then put the bowl on the floor and picked the pasta up and dropped it into the bowl so that it made a different noise and he came running out to see what was happening and he dove straight in! I was so happy, he was picking it up and running his hands through it all the time while laughing away. I then found a bigger container so that he could move them about a bit more and sit in it if he decided to.

He loved it, he was putting it between his toes, and even decided to take a little nibble on a bit which is truly incredible with his very strict diet and unwillingness to try anything different.

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A very simple sensory play, but it was very effective!
Next time I am out I am going to buy a few bags of different kinds of pasta and color them all different colors, so it is even more visual for him!
After a week or two of playing with the pasta I may start to put a few bits of cooked pasta in at a time, only a very small number at the start and then slowly building. I know slimy things are not his favorite and is the reason he wont eat several foods (ham,pasta,etc) so I am going to do it very slowly and hopefully he wont notice the change and will accept it very well! =]

weeohana xx

0

Mums & Tots!

When I was at my CDC appointment with my little man they recommended a mums and tots group that was just for children who attended the unit as they know how hard it can be to go to other mums and tots with lots of children/noise etc! So I thought I would give it a bash!

When I would go to other mums & tots he couldn’t handle the noise, amount of people, amount of toys.. everything was just a giant sensory over load so he would go into a meltdown. This would consist of him screaming/crying/throwing himself to the floor/hitting his head off the floor/running at walls/scratching at himself.. people would stare, which made me feel extremely anxious, upset, judged and many other things. The leaders of the mums & tots would come over and sing/give him toys/try to help.. but obviously that just made it worse. Obviously they are trying to help and didn’t know what else to try/do.. so I ended up leaving and taking him to the car to settle him down, I would say to myself that maybe he would like a different mums & tots, that I would try others. Believe me, I tried several different mums & tots, I think I went to all of the ones in my area, but in the end I gave up. The longest I managed to stay at one with him was 15 minutes. When we first went in, he hated it, So I gave him my phone and sat him on my knee for him to watch Morph and accept what was going on around him and hopefully join in. A lady beside me made a comment about how he should be off playing with the other children and enjoying himself like a normal child rather than sitting playing on my phone. I didn’t even bother to reply.. I picked him up and left. I made a group decision for him and me, that we wouldn’t go back to a mums & tots for a long time.

Until when I was at my CDC appointment and they told me about the mums & tots I thought it sounded fantastic, it still took me a few weeks to go to it, to get over my anxiety of the looks/ what ifs and so forth! When I went, I couldn’t understand why I had put it off!

Its a fantastic mums & tots ran by a wonderful group. When we first went in, he wasn’t too happy.. so the lovely ladies there got out the bubble machine and then went away from him. He sat on my knee for while watching the bubbles, then he got up and started popping the bubbles then ran off and saw all the other wonderful things they had. The ladies then got me stuff to fill in while chatted to me about what they did and what was going on with my handsome man.
There was only 5 other children there, in a big hall with all the toys spaced out and a wonderful sensory room. It was fantastic, he pottered about by himself happy as larry without a care in the world. It was wonderful to see, and I chatted to a few of the mums, some of them in a very similar situations to me, it was great to speak to others who are going through the same sort of thing, who know what its like to still be feeding your two year old 10+ month food.

We now go every week and when we pull up outside the hall his little face lights up and he starts flapping in the wonderfully excited way that he does! Its great, to get out of the house and for us both to enjoy ourself and relax.

Is there anywhere that your children especially enjoy? Places they really don’t like?

WeeOhana xx

10

Child Developmental Clinic

It was my little mans CDC appointment the other day, and I really did not know what to expect from it. I had asked several people who had been to them before and everyone gave me different answers, so I’m going to tell you about my experience and how it all went!

The whole day before I had so much nervous energy I ended up sorting out my whole kitchen, cupboards and the lot!  hadn’t expected to get much sleep that night but I must have worn myself out running about like a lunatic cleaning/sorting/worrying etc as I actually managed a pretty decent sleep! Which was a great start as it gave me the energy I needed to be able to listen and concentrate on what was being said.

We were called from the waiting room and met a lovely lady who explained to us what was going to happen during the 90 minute appointment and that there was six other people there to observe him .. so seven people to watch my little 23 month old boy, that seems like an awful lot right! Well it seemed like even more when you walked into the room and saw them all staring at you..all happy, smiling and welcoming faces just very over whelming! My little man wasn’t sure at all what to think, but they are all very used to that and they had everything under there belt, the winning one for him was bubbles! He loves bubbles, what child doesn’t! They then all introduced themselves one by one; physio therapist, speech therapist, Occupational therapist and so forth! The questions then came as he was being observed by all the people there and as one by one they all went over to him and tried to get him to do whatever it was they wanted.. from walking up stairs to making eye contact.

There was so many questions asked I can hardly remember any of them or how I even answered, my partner told me he was impressed with how well I handled them all and answered them all… So I’m thinking they weren’t really the easiest of questions and that is why I have forgotten the majority of them, mixed in with my anxiety I’m surprised how I even remembered to breath through it all let alone answer all these questions thrown at me!

They then went around the room and gave there feedback to us about there findings; one thing that I was worried about was the muscles in his legs being a little short as he is constantly on his toes and not only just a little bit he goes fully up on his toes and occasionally will even walk on the other side of his toes! His muscles are fine though and we were advised to get him some heavy boots to try and encourage him to walk flat footed otherwise he will end up shortening the muscles in his legs. I am now on a hunt for some cute little boots in a lovely size 5! =]

The speech therapist told me to work on his eye contact and that we would have a few appointments with her shortly to help and give me more ideas on how to get him to give eye contact. Then the others mainly spoke about how to try and help him in the world around him, doing lots of messy play to try and encourage him to get used to different textures and how everything in the world around him is. To try tight clothing when I take him out to see if this helps him to feel settled as its like getting a big hug and close contact. I got lots of ideas of things to do with him to try and help him get used to different textures etc so that he will then hopefully start to eat a lot more things! Did you know that your hands are very closely linked to your mouth, so hopefully when he accepts different feelings on his hands he may start to in his mouth too!

It then came back round to the lady who was asking all the questions and listening to what everyone said; she looked at us very seriously and said that it was Autism.
Even though I had expected this my heart sank.. I just needed to get out of the room. Away from all the eyes watching and all the ears listening and waiting for my reply.
She then went on to tell us that she couldn’t refer us to the Autism Clinic until he was two and a half years old, so that we would have to come back in six months for this and that when we were back we would also discuss where would be best for him to go to school and to apply for schools too then as it was important to get on there lists from the start to make sure he got a place.

I asked a few more questions about how long till certain appointments etc.. then quickly left after thanking them all.

Even though I expected this outcome, it was still a huge shock. I am still coming to terms with it and I’m sure I will be for a very long time. I’m really not sure how to feel about it all.. all I know is that our life has changed forever.

I love him & I always will, no matter what.

WeeOhana xx