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The impossible wish.

 

I wish I could spend a week, or even a day being you.
I want to know how this world seems to you
What makes you smile
What makes you cry
How all these noises sound to you
Why you don’t like eating ham
And why you love mince so much
Why playing with letters is one of your favourite things
But putting them together to make words seems.. well I guess scary to you?
I wish for this so I can really understand you
So I can understand why you dislike so much that brings others joy
And how things Bring you joy that I don’t understand why
I want to bring you all the joy possible
But how am I meant to when I have no clue what it’s like being you
Or what is going on in your little world.

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7

Dietician Disappointment.

Last week we had our first appointment with the dietician. I was very excited for this appointment and couldn’t wait for some new ideas on how to encourage Dylan to eat or at least even try more things!
At the moment his diet is extremely limited  and we have tried everything that we can think of possible ways to encourage him to try other things also to drink things such as milk to ensure he is getting all the goodness he needs to grow up strong and healthy!
We haven’t had much luck at all, and he is now starting to go off things that he used to eat.

We had to weigh out and write down what he had eaten in the past three days and when it was all wrote down it hit me with how little he really did eat. Every day breakfast, lunch and dinner is exactly the same with a variation on snacks and what he has after.. but by variation I mean three different things.
We are lucky because he does drink pure orange juice and apple juice, though he wont drink anything apart from them.

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Going in with high hopes and expectations for ideas of how to encourage him to eat more, drink more and live a little healthier and coming out with no new ideas at all on anything was rather disappointing.

She told us that his diet was extremely limited and that we had to try to encourage him to eat other things. (What did she think we had been doing!?) When I asked her how we could encourage him to eat new foods she just said to keep trying what we were already trying. This was without even asking what we were trying.

Something that she did do though was prescribe him a multi-vitamin powder type idea that has all the essential vitamins and goodness in! Though she did say in her next breath that she doesn’t think he will take it, so yeah. I have my fingers crossed that he will, but her lack of confidence wasn’t the greatest.

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We learnt something that we weren’t aware of too, bread has calcium in it! Well, the Hovis best of both contains calcium! If your little one isn’t calcium this is a great way to up the intake in their diet! =]

Fingers crossed we can come up with some new ideas ourselves to try to encourage him to widen his diet a bit!
If you have any tips please let me know!! =D

-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

1

Garden & Park Fun!

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Dylan has recently got extremely good at writing the letter A, generally with both hands at the same time! As soon as he goes into the back garden he is looking for the chalk and tries to ensure that ever single gate panel has an A on it.
Amellia loves it when he writes the letter A, as she says that he is looking for her when he is doing it. I adore the fact that she is starting to enter his world and accepting that he interacts in other ways, and I for one will not be telling her that he just has a huge love for the letter A and writing it and that it doesn’t mean this!
He can also write a few other letters, but A is in a strong first place at the moment, along with his favourite colour; brown.

We all went to the park the other day and had such a lovely time, Dylan had me going down the slide and climbing up on the cargo net so that I could help him, well by help, he was clung to me like a limpet.. it made manoeuvering him to the slide pretty difficult but with daddy close by we made it safely!

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We then went on the swing basket, after a while I told Adrian that it was his turn!
Look at this beautiful capture I got! I love it!
Amellia snuggling into him with the most beautiful smile while she held his hand and him accepting it, Dylan playing with her hair and daddy with them both safely beside him with the most loving & happy smile on his face!
Perfection, the three most important people to me, all having a lovey time together and I have this wonderful snap to look back at and smile!
Though I must say I’m pretty jealous he didn’t snap a picture of me with the pair of them.. but he is a man, this is why woman take selfies, otherwise they wouldn’t be in any pictures with their kids! lol!

-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

 

 

1

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

1

They aren’t all the same.

Many people have been telling us how lucky we are that we have already got Dylan seen by therapists, that we have got his education plan started and that we are already on the right route for him. Though how true really is this?

They tell you of the story of their best friends, cousins, aunties child who was only recently diagnosed at the age of ten. That they had been going through school without getting any extra help as they didn’t know anything was wrong until the school or someone else pointed it out. They then encouragingly tell us that Dylan will do great because if this kid could do it in mainstream school, why couldn’t he. That people didn’t even know, so people won’t notice with Dylan.
By this stage I’m already tuning out, nodding along, or looking at them like that have 6000 heads.
Don’t get me wrong I am super pleased that this child that they know somehow is now getting extra support and doing fantastically, but lets be realistic
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If you think these stories that you are telling me are helping me, or if you think all autistic children are the same; I encourage you to come to my house, give Dylan his lunch and then take him out to… let’s say for example soft play. (All children love soft play, right?) You can see what its really like and I can have some much needed me time, maybe I’ll clean, bath, or even have a nap!

Now that you are back to a refreshed and rested me, let’s have that chat again.
Do you now understand how this story is a much different case than Dylan?
You see, he couldn’t cope in a mainstream school. He is non-verbal, and well you have just had him out for the day so you witnessed his melt downs, how he lacks the understanding of any basic instructions, that he doesn’t enjoy what most kids enjoy, that there is no chance that he could make it to the age of ten before we questioned this. How in a mainstream school he wouldn’t cope a day, let alone several years?

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I will listen to your story and tell you how great it is that this child has now got the help they need, but please don’t try and link it to my son until you have witnessed what he is like.
That it isn’t just because of my background that this has been spotted early, that this would have been spotted by my health visitor anyway even without my questions and phone calls to her.
My son has severe autism, this affects everything and anything he does, every day.
Not just when he hasn’t slept well, or has a cold, or on Sunday.
This is every day, everything we do, and anything he does.

“If you’ve met one person with autism, you’ve met one person with autism” – Stephen Shore.

-WeeOhana