0

One of the best purchases.

Dylan uses his IPad a lot, and one of his favourite things to do with it is use the photo booth app. This is a preinstalled app on IPads that provides you with effects which change the colour or distort the image that the camera is showing. When we are out and about Dylan finds things really quite distressing unless he is viewing everything through his IPad camera or using the games on it as a distraction. Mainly though he is using the camera, so I decided that I would get him an actual camera and build on his interest and give him an aid to help him when out and about.

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I spent an evening researching cameras and trying to find one that would be still fit for use after being dropped, bumped and handled by a clumsy 3 year old. After looking online I quickly realised that not very many people made cameras for young children and I could only find one that was in a rubberized and safe looking case, the Vtech Kiddizoom Duo . Vtech make a range of different cameras for children but this one looked perfect for my little man and after reading many reviews I couldn’t wait to purchase it.

I headed out to get it the next day because after looking up all about it and deciding it was the one for Dylan I found that it was in the sale at Argos, bingo! After purchasing it I then decided I would give it to him the next day when Amellia was in school so that she wouldn’t be pestering him.
The next morning I gave it to him and he loved it! He didn’t put it down all day and didn’t use his IPad once after being given the camera, which is incredible because normally we have to listen to the gummy bear song at least 30 times a day.

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After I showed him how to add effects to the screen and change the colour he didn’t need much more help. I showed him the button to take pictures and how to change the camera from the front facing to the rear facing one but Dylan doesn’t tend to take many pictures he just likes to watch the world go by on the screen as it isn’t so overwhelming for him then.

A common complaint about the camera was that it took batteries and wasn’t rechargeable but to us this was actually a huge positive it means that no matter where we are we can take a spare set of batteries with us when we are out and about incase the others run out. My complaint would be that there are games on the camera, they are unnecessary to be on a camera. I have removed them from Dylan’s but he wasn’t using them anyway. The battery life has really impressed me. He has used it all day and I mean all day and it has only just came up with a low battery warning, my next purchase is going to be some rechargeable batteries so that we can always some in it and a charged lot in his bag.

Such a simple to use and perfect camera. I think it is one of the best if not the best thing that I have ever bought for Dylan.

-WeeOhana

1

Still coming to terms

I’m still coming to terms with it all
it ain’t fun and games
It’s tough, it’s real tough
The future I imagined has had to change

One day our world flipped 180
This is not what we had ever envisioned
But we are learning how to help
I just wish I could make everything okay

I know this is a long and tough journey
Full of many unexpected twists & turns
Wonderful joys
And dreadful downs

I will always do what’s best for you
I will fight for what you deserve
Help you understand what’s going on
And encourage you to grow

You mean the word to me, to us.
My perfect little person, flaws & all.
You complete this family.
You complete my heart.

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2

A-Z

Recently First Time Valley Mam shared an A-Z of what autism meant to her, I thought this was a great idea and something I am going to try to do once a year to see what I have learnt throughout the year and how things have changed.

A – Autistic.
This word has crossed my mind for as long as I can remember, one that I am still coming to terms with and trying to learn everything I can about.

B – Battle.
Everything feels like a huge battle, we have to fight for so many things to get done at the right time to enable Dylan to have what he deserves at the right time.

C – Counting.
Numbers are a huge thing to us now, Dylan loves numbers and trying to count as he goes along. Often he will just be counting his foot steps as he walks along.

D – Dylan.
My wonderful little cheeky monkey. He makes me so proud and amazes me often, with that curly hair of his and cheeky smile what’s not to love.

E – Eating.
How can one of my children love food and the other have such a huge aversion to eating. It is a constant struggle to try to find food that he will eat that isn’t mince..

F – Friendships.
When something so huge happens in your life you really find out quite quickly who are your true friends, and then better still you go on to make friendships that are true.

G – Goals.
Something that I have found has been really important to helping myself keep a level head is setting attainable goals for Dylan. Ones that I know he will reach sooner rather than later, I feel if you set big goals that aren’t very attainable you end up beating yourself up about it.

H – Home
These four walls are starting to send me a little mad, Dylan is not one for going outside or to places he doesn’t know. We are back to even the park being a huge struggle for him, home is his safe place where he wants to stay 24/7.

I – IPad.
Something about those sped up, backwards, slowed down videos of the gummy bear on YouTube make Dylan’s world complete,  he loves his iPad and without it we wouldn’t be able to go anywhere. It seems to be able to help him zone out from everything around him.

J – Judgement.
I’m having to grow a thick skin very fast, you get so many judgemental looks and comments when you are out & about.

K – Knowledge
My knowledge about autism is ever-growing and I know that it will never stop.

L – Lines
Lining items up brings Dylan so much joy, but if you touch that line or move it you better be prepared to put it back as quickly as possible.

M – Meltdowns
With very poor means of communication Dylan has many meltdowns. He can’t tell us what he wants and we can’t explain anything to him, I’m hoping in time these will become less frequent as he grows older and we find a way to communicate.

N – Nonsensical
Recently Dylan has started babbling away to himself and I can not wait for it to start to actually make sense!

O – Obsessions. 
Dylan’s obsessions go far beyond what I ever thought an obsession could be. If he has a set of figures and loses one he gets very worked up extremely quickly. Thankfully nothing has gone missing for good so far.. normally they can be found under a sofa or even just sitting behind him.

P – Pointing.
This is something that I am working on teaching Dylan how to do, not something I ever thought I would have to teach a child to do.

Q – Questions.
My head is full of questions but as soon as I get the chance to talk to a professional somehow they just vanish as if by magic. I’m sure I will always have tons of questions floating around in my head.

R Repetition.
Dylan’s favourite thing is repetition, his play is repetitive, the videos he enjoys, what he eats, literally everything Dylan does and enjoys is based on repetition.

S – Sibling.
Recently the bond between Amellia & Dylan has grown immensely. Obviously it has to be when they are both in the right mood, but when it happens it is simply wonderful to watch them getting on and enjoying each others company.

T – Treasure.
I now treasure so many memories that others would not find a huge ordeal. These are so important to me and are what keep me going on a rough day.

U – Understanding.
To get through this all we have to be understanding as a family. We have to understand how it affects each of us, and help each other when we are struggling.

V – Verbal.
Dylan has started to use echolalia a lot when watching videos of his favourite things. We are hoping to expand on this in the future so that we can communicate with him and he can communicate with us to tell us what it is he wants or needs.

W – Worry.
This is something I do constantly. I have always been a worrier but now it has got a lot worse as I’m sure you can understand.

X – Xmas.
It was a rather painful time for us that Dylan just had no understanding whatsoever of what was going on, Amellia loves xmas and I hope one day Dylan will love it just as much.

Y- Yourself.
Something that I have lost during this whole thing. Becoming a mother changes someone greatly, but becoming a mother to a child with additional needs is an even greater change that I can not explain.

Z – Zips.
Something that Dylan finds rather distressing unless they are done up right to the very top.

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-WeeOhana

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 

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

 

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

3

Acceptance & Denial.

Coming to

I think it is a very common thing to do, to doubt what you have been told about your children. Especially when you are trying to come to terms with it.
I go through phases where I think to myself that there is no way that Dylan is Autistic. I mean, he is my perfect, handsome wonderful, clever little boy who I totally adore, obviously. This is something that will never change and I will always feel all of these feelings and many, many more about him. He is my son, my little buddy who I will always love with all of my heart.
It is hard to accept that your child has anything wrong with them, something that changes how they view the world and how the world will view them. Something that you as their parent can’t fix with love, medicine, therapy, or anything at all. Yes you can help make it all a little more bearable for them and show them how they can ‘fit’ into the world and the supposed things they are meant to feel, enjoy and like but is that really helping them when you are then trying to make them conform to what we view as ‘normality’?
I have always been one for trying to join Dylan in his world, copying him in things he enjoys, if I enter his world then he may want to join me in mine for a bit too, but I am not for forcing him to conform. It’s all about give and take. Even in a relationship with my husband; I don’t force him to like everything that I do, and likewise I don’t like all that he does but we compromise so that everyone is happy and I’m sure that is the same for you, right? So now explain why should I try to force my son to like all these expected things rather than letting him enjoy what makes him happy and his own little self?
IMG_1947.jpgAfter doubting it all I generally very quickly get a wake up call and brought back from my safe haven. Sometimes this happens so abruptly that it can take me weeks and months to recover emotionally from.
I always feel that I am very in denial about how much Dylan’s autism actually affects him. I am with him 24/7 so Dylan’s quirks and ways are all that I know now. We have all got used to this and the how Dylan is, but when you see other children his age it surely gives you a huge wake up call to just how much it does affect him.
Its made much more obvious about how much it has effected his development when around other children his age. You see them chatting away, running to mummy and daddy to ask them for help or to show them what they are doing, showing off their new toys to their friends, playing together and so many more things that I don’t process as things that Dylan struggles with until they are right in front of me and made so blatantly obvious that these are things he should be doing too.
Amellia finds it very difficult to process when we are around children his age and she has been made aware they are the same age. When we get home there will be lots of questions of when will Dylan talk, when will he want to have a sleep over in her room, when will he want to play Lego with her and not just knock the tower over and many, many more questions. I answer them as truthfully as I can, Amellia is incredible with Dylan and totally adores him but sometimes people forget that she is only six and obviously this is very hard for her to process and understand too.
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I think the going back and forth between thinking that he clearly is fine and then to realisation that no he obviously is autistic is just a way of my head trying to get round it, my head trying to accept it all and come to terms.

-WeeOhana