8

Final Diagnosis Appointment.

When I got the letter through the door with the date for Dylan’s final part of his diagnosis I was overwhelmed with emotions. I cried instantly, with happiness that we finally had got a date after waiting all this time, with dread about it being final and what ifs. Thankfully it was for the next week so I didn’t have too long to wait with all these emotions flying around in my head.

I had asked on a local autism group on Facebook about what I should expect as I was pretty clueless to what would happen and wanted to at least be a little bit prepared, and I’m so glad I did ask. I was told what to expect and that the place I was going to was pretty run down and when we pulled up to it I couldn’t believe quite how run down it was. We managed to get parked in the car park which had very few spaces with the majority full and had a little pep talk about how it would be OK whatever happened.

Before we got into the building Dylan was already pretty unsettled and I was worried as had heard from a few friends that if your child isn’t compliant they will rearrange another date for you to come up and get them seen again, which obviously I really didn’t want to happen.
We were met by two lovely ladies who showed us to a waiting room which had a few toys in, typically all the ones Dylan picked up or showed a little interest in didn’t have working batteries in so this annoyed him more and me. I thought they would have ensured that the majority did have batteries considering that they are fully aware of the children who come to the clinic sometimes have a low-level of understanding. Anyway..

After waiting for about 5 minutes they came and got us and told us they would take Dylan into a room which we could see into through a 2 way mirror but that if he wouldn’t settle for them they would get me to come into the room with them and see if it helped. While we sat and watched they tried to get Dylan to engage in play with a shape sorter and some sensory toys but he just kept putting them back where they came from and was getting more and more wound up, until they got a pop up toy out. He loves pop up toys so this settled him a little bit until they tried to take it away and he just kept hugging it close to himself  and throwing away any other toys they offered him. They then asked me to come in to see if this would help settle him after having him in for 5 minutes, I looked at Ad and said I think we will have to come back..

I went in and he climbed onto my lap and was still pretty distressed by everything that was going on, one of the ladies even tried to tempt him with Play-Doh which is usually one of his favourite things but he just got madder. I had been in the room less than ten minutes and she said, “we have enough evidence now, if you want to go back out and wait” I was shocked but also super pleased that despite him not playing ball they managed to get all the information they needed and in such a short amount of time.

He was not for settling after all that had just happened and being pushed to try to settle, but the ladies came back in quickly enough and told us that they had enough evidence today to give Dylan an autism diagnosis, after this Ad took Dylan out of the room to try and calm him and so that I could chat to her and hear all the information she had to offer.

They offered for us to come back to chat without Dylan but we decided it was best if they told me then pass the information on because let’s be honest the place was a 45 min drive away, I don’t know anyone I could leave Dylan with for that length of time.

They have referred us to get support from others, are going to provide us with a few courses to go on so that we can learn as much as possible about everything that is going on and will send the report out with all the information about what they had found today in approx 6 weeks.
We then headed back to the car and Dylan calmed down when he was back in a familiar place safe in his car seat.

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2

Music Therapy!

Recently Dylan started music therapy and it is amazing, before he had his first one I wasn’t really sure what to expect as I hadn’t really heard much about it. I am always keen to try new things, especially when I really think he will enjoy it. Dylan has always loved music, if a fast song is on he will go crazy and shake himself really fast and if it’s a slow song he will move slowly, it’s really funny and adorable to watch!

He has now had 3 weeks of music therapy and has really enjoyed it, I am learning a lot of new things to do with him to help encourage his speech and interaction which is obviously  amazing and not something I really expected to come from music therapy.

 

She brings along a whole bag full of instruments, and starts by playing a hello song on her guitar, then she asks if he would like to play a certain instrument and generally he jumps about really excitedly. Then when he is playing the instrument she then sings another song to try to get him to play when she stops and she will also then go at his speed, for example if he is to play fast, she will play fast on the guitar and so forth.
Then after doing that for a while she then gets Dylan to choose another instrument and she will play a beat and encourage Dylan to copy this beat and then copy the beat he does. It is all about give and take, if he copies you then you copy him.
Other things that she also does is sing songs that he knows and stopping at random unexpected words to try to encourage him to join in and say the missing word, sing consonant sounds together to try and get him to copy and again then copying what he says as well.

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While playing these instruments Dylan is also feeling a lot of different textures, Dylan really struggles with many sensory things in his day-to-day life; for example he cannot wear jeans, certain t-shirts and is extremely fussy with his foods. She is also going to add more textures and things into the music therapy like cooked pasta for example to encourage him to touch it when he is having lots of fun and then hopefully after a few times he will touch it in other situations too

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It is a costly therapy but it is one he is really getting a lot out of so we will obviously continue with it, I cannot wait to see what other ideas she gives me to use outside of music therapy and to watch Dylan progress week after week.

-WeeOhana

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

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

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