1

Feeling Strange..

I’m still feeling slightly strange about the whole thing, I’m not really sure how I feel about it. I suppose because we have been told by so many professionals in the past two years that Dylan is autistic but they just couldn’t officially diagnosis it we were very ready to get the day over and done with when it all became official.

When we were told at the diagnosis I didn’t know if I wanted to do a happy dance that we had finally got it all over and done with and could now move forward or cry that it was official and that the others hadn’t all been mistaken.

At the moment I’m feeling pretty numb to feelings I suppose. Sort of floating like I’m not too sure what to think of it all, trying to process it all and gather my thoughts but this week has been crazy with appointments and I really haven’t had time to process it before having more things thrown at me that I’m trying to process too.. life is not easy being a mum!
I am sure I will catch a break shortly and be able to think it all through but for now I’m keeping on going and making sure that everything is going right for my kids and that my hubby is happy.

When going through things like this communication is key, he knows if he feels unhappy, or anything at all that I am here for him no matter what and I know that he is there for me too.
Our kids are our world, but obviously these things take time to process and adjust too. We will get there together and be stronger than ever before, because if we don’t communicate through this all we will fall apart.

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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13

The fight for a school place!

We were told from early on that Dylan would need to attend a SEN (Special education needs) school. This means that we started the process to get a school for him at the earliest stage possible. Despite starting this process as early as possible it was still extremely stressful and I still can’t believe that this is still allowed to happen year after year.

We had a lady come out to the house to observe Dylan and ask questions, loads of reports that had to get sent off and heart wrenching forms to fill in.
After doing this all I was hoping that we would be told a date when we would know what school he was going to and that I could leave it up to the board to sort out without calling and hassling them. This was not the case at all.

As I’m sure you are aware for kids in mainstream they are told a date that everyone will find out what school they are attending, yes this can be stressful because sometimes you don’t get the school you wanted. I know how that can be as it happened with Amellia, so how come this can’t happen for SEN kids too?
I personally and I know many others feel that it is in fact more important for SEN kids to find out early on which school they are going too so that they can visit it many times before hand, drive the route to the school, get used to the feeling of the uniform, meet their teachers and many other things.

After many phone calls over the past few months to make sure they had got all the details they need and chasing up others who hadn’t passed on what they needed and having other professionals call to ask what was going on with the whole process it was starting to get very close to the end of term and the education board close whenever schools do so this sent me into a little bit of panic mode.

I called them and was put on hold for 30 mins and then they hung up so I called back and after another 30ish mins wait someone answered the phone and said “Special Education aren’t taking anymore calls today” then hung up again. Now, this was at 10:30am in the morning. So I decided to carry on with my day and try and forget it and call again tomorrow, though obviously it wasn’t really an easy day.
The next day they then told me a different number to call, who then told me another number to call and I must have been given about 6 different numbers and ended up going round and round in circles. While making all of these phone calls I was also running circles after my crazy pair and sorting them out too, eventually I got through to someone who said they would check on the computer .. they then told me they would call me back tomorrow.

She didn’t call me back and it was then the weekend.
They got back to me during the next week and offered me a place in a school I hadn’t even been to see as I was not advised to go and see it, so I told her this and she then tried to claim that the school that was my preference was over 20 miles away from my house. I told her this was not the case and she didn’t believe me after checking my address several times, so she said she would call me back and look it up properly. I decided to do a quick check to see and it was less than 4 miles from my house. When she called back she told me that it was still showing up as really far away, but that she could offer me a different school that I had mentioned I had seen and liked. I was over the moon, she told me I would get the paper work in the next few days and I couldn’t wait. When the paper work didn’t appear after many days I was starting to wonder what was going on. I decided instead of doing the whole going round in circles thing again I would phone the school and ask if his name was down and was he afternoon or morning.

I phoned the school just for reassurance and I ended up in floods of tears, I felt like a complete twat but they were so lovely, supportive and understanding on the phone which was amazing and I apologized a lot for crying. They voiced their opinions on the situation and said they would do all they could to help.

I phoned the education board and said I needed to talk to someone now, but they then told me they didn’t handle placements for nursery so I had to call someone else and after lots of being put on hold they told me they had already sent the letter to the school a good few days ago and on phoning the school back they said that this would not have been the case as they would have already received it. They then told me to call back Monday to see, so I had a whole weekend really fretting about what was going to happen on Monday.

I called the school on Monday and had a long chat with them about what had been happening that morning but they still had not received a letter so she phoned the education board to ask what was going on and why was this allowed to happen to parents as I wasn’t the only one and thankfully she has secured a place for Dylan.

I am over the moon, but can not believe all that we have been through these past few weeks and now my mind is all over the show with absolute delight and such a dump of emotions.

I don’t believe that this is allowed to happen year after year to so many parents who are already going through so much.

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

6

Airplane Bags!

This time next week we are going to be in Disney World! I cannot wait, its a big secret from little miss and she hasn’t got a clue. She is in for the most amazing shock! She is always asking to go down and spend time with my parents so we are going to tell her that we are going down to spend 2 weeks with them and then let my dad tell her that we are all going away to Disney, she is literally going to lose it!
I’m pretty nervous about the 9 hour flight.. Dylan should be ok once he has got used to the noise as he will happily sit and watch his Ipad, Amellia doesn’t like staying still for more than five minutes. It’s going to be an experience.. Ad made a joke about buying everyone on the flight a pair of ear plugs and handing them out at the start, I’m thinking maybe he actually should, lol!
I thought I’d share a little post of what I have in there bags for on the airplane, maybe give you some ideas for if you go traveling with little people!

Fully charged IPads with movies and YouTube videos that they know and love downloaded, new apps put on but also the ones that they use already, especially for Dylan. He is happier doing things that he is used to and knows how to do. I’ll do another post shortly with the apps he uses now, but here is the apps he loved last year and the majority of these are still played regularly. To go with the IPads I have also got two power packs so that we can recharge them when the kids hopefully sleep on the flight..

Colourings books with twistable crayons have been added too, if you haven’t seen the twistable crayons before they are amazing! We love them, so much easier than having to sharpen crayons etc. Amellia has got one of the Top Model books, they are full of outlines of people who you then draw clothes/hair etc onto them and Dylan has one full of Thomas the Tank engines!

Stickers, stickers and more stickers. Both of the kiddies love stickers so I have got a selection of different ones and have done that awesome mum hack of peeling off the outsides of them so the stickers come off easily without the kids getting angry at them and ending up ripping the stickers which then ends in tears. I have got them a book of blank pages each to stick them onto and to draw pictures on too.

Reading books, more for Dylan than Amellia as he loves reading and looking at books. I have got him an alphabet book, number one, shapes & colours. He has lots of alphabet toys but I didn’t want to bring them on the plane with us because if he gets mad and throws it then we will have to get everyone to hunt to find the letters to calm him, which would be pretty awkward! Amellia has got a reading book about Tinkerbell to keep her going.

I got a little set of play doh for Amellia to have on the plane, but not one for Dylan because he really enjoys eating and licking play doh.. yep he wont eat food but he just loves that horrible play doh taste. Typical. I have also got Amellia a Disney 3DS game so will be putting my DS in her bag for her to use and hopefully keep her entertained for a little while.

Finally i have put a few blind bags in as these bring a lot of excitement to little ones and entertainment while they play with them, oh and also headphones and noise cancelling headphones. Dylan currently wont wear noise cancelling headphones but I am thinking that if we are on the plane and the noise is really annoying him and wont just go away hopefully he will realise they help, along with favourite teddies for comfort!

What do you take with you on the plane? Any other things you think would keep my pair entertained?!

-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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