9

Leaps & Bounds of progress!

These past few months Dylan has been slowly progressing, but over the past month it seems to all be coming together. We have many words now which is absolutely incredible seeing as every time he has been seen by his pediatrican we kept getting reminded that not all autistic children talk and not to get our hopes up. He can request things like his iPad, juice etc, it’s amazing to see and I have got a lot of hope for the future now and I’m sure his language skills will continue to develop and maybe one day we will be able to have a conversation with us! It gives us a lot of hope and really lifts spirits.

In school they have started to use pecs to help him move from one place to the next, his anxiety is brought down a lot with these pictures and I am now running about like crazy taking pictures of everywhere we go so that I can use them at home with him too. I am hoping it will help when out and about with him so that we can keep him calm and hopefully enjoying what we are doing rather than worrying about what is to come next.

He is starting to try new foods, well he has licked a yogurt and they are trying to encourage him to try new things in school via pictures and are going to get me some to try at home with him, which is a really exciting prospect. Dylan’s eating has always been a worry for me, as much as the dietician says it is fine because he isn’t losing weight it cannot be healthy for him and is not ideal. I would love to be able to just pick him up something when out and about but unfortunately at this moment in time that isn’t really attainable as he doesn’t eat very much at all especially for dinners and lunch. Maybe one day he will eat a sandwich, now that would be incredible!

He has also started to interact a lot more with Amellia and the other children he knows. He will ask them for races using his makaton that he is starting to pick up and what is even more amazing is that the kids around us are so great too him. They understand him really well and it is so great to see them running around together and enjoying each other’s company. Something again I wasn’t sure I would ever get to experience with him.

Something he has started to really enjoy also is playing mario, he is learning how to control him and enjoys walking him around the map. Before he just used to hold the button and laugh as he fell off the edge, which is funny.. but finding something he really enjoys doing and playing is great!

Obviously he still has his hard times, but I totally adore him and he is simply wonderful. I will continue to encourage his growth and I truly believe give a child the tools and encouragement they need and they will progress in there own time!

5

My child, my choice.

With Dylan starting school recently I have had a lot of people giving me their opinions on something which I feel strongly about and tell them before they even start with the back and forth.

My child, my choice.

I don’t agree with putting my child on a bus to and from schools. He’s three ffs. I wouldn’t put a neurotypical child on a bus even if it was a specific one for the school so I’m defiantly not putting my neurodivergent child on one.

People argue that it gives me more time, but I would rather do what is best for my child than what is best for me. I’m pretty sure that’s normal for parents.

I hear things like oh but everyone else does it.. I’m not a sheep thanks very much, I think for myself and what benefits my family the best. Also, just because everyone else does it does not mean it is right. Many things are questionable that “everyone’s does.

Not long till he starts nursery now, where did the time go!? They grow up far too fast and with them both in school now I know the years will fly by even faster 😦

13

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