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

1

New Babies <3

We got some new little babies in our house the other day!

Amellia has been asking me for a pet for a while and after lots of research over which pets are best for her age, how to look after them, life length and many other things we settled on a pair of guinea pigs.

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They are still nameless and are settling into the home very quickly. Amellia has had a cuddle from them both on a few occasions and soon we hope that we can get them even more relaxed while being handled and let Dylan see them a little more.  If you have any name suggestions please do let us know, we are pretty useless at names!

We have had lots of fun going out and getting them treats and toys for in the cage, and Amellia has particularly enjoyed getting them lots of different vegetables. She loved that they really enjoyed the broccoli as this is her all time favourite vegetable.

She has been sitting beside the cage at every opportunity and its very sweet to hear her talking to them and singing little songs, it is making them feel a lot more relaxed around her and helping her a lot too I think!

I can’t get over how cute they are and I’m so happy they are settling in well!
Any hints or tips on how to keep happy and healthy guineas please do let me know, along with name suggestions too! =D

-WeeOhana

0

How to get help with disabilities at Universal Studios & Disney world

Disability Passes in Universal &amp; Disneyworld!

When we headed to America I was really worried about how Dylan would cope, but I had done a lot of research and had heard about how great the parks were with dealing with disabilities and the help they would offer. I thought I would put it all together in one post for you guys to see what they offer, how to get it and how it helped up!

Disney World

At Disney the pass is called the DAS pass, this stands for Disability access pass and is a whole load of help, our visit would not have gone so well without it. First of all how to attain this pass, is to head to guest relations in any of the parks. From reading online if I was you I wouldn’t try to get it at Magic Kingdom as the que can be quite long when the park first opens, so we headed to Hollywood Studios and picked it up there. We went in and I asked the lady how we went about getting the DAS pass for my son and she said that she would help sort us out. She took a quick picture of Dylan and connected it to his Magic band and scanned all of ours then asked about how he would be if he had to leave his buggy so I explained that if he was in ques around lots of people he would find this distressing if he didn’t have the safety of his buggy and would run off as he has no danger/safety awareness so she then provided us with a sticker for his buggy that meant crew members would treat his buggy as a wheelchair. This was amazing, it meant when we were queuing we didn’t have to worry about him getting distressed in the que and meant that he enjoyed the rides when he was in them as we could take him straight from his buggy onto them and it was waiting for us at the end of the ride too.
The DAS pass was wonderful, it meant that if there was a ride we wanted to take Dylan on we could just go to the ride and pick up a return time which was the wait for the ride minus ten minutes and then when we returned we could then go into the fast pass line. You can only have one wait time on your band at any stage and the person who holds the DAS pass has to be going on the ride because obviously it is to benefit them.
It was very simple to attain the pass, a lot less stressful than I thought it was going to be and all of the crew members at Disney were very accommodating, welcoming, super friendly and just made our visit simply amazing.

Universal Studios

At Universal it’s called the AAP which stands for Attraction Assistant Pass, and is pretty similar to the pass at Disney. You pick it up from Guest relations which is just inside both parks, we went in and again I asked about how to acquire the pass and after a few quick questions it was quickly set up and he also did that Dylan’s buggy was to be treated as a wheelchair too, so this meant again he could go in the ques and the shows in his buggy. The AAP works slightly different because if the ride has less than a thirty minute wait you can then just go into the express pass line. If it has a longer wait you then get a return time and like the Disney one you can only have one wait time at any stage. We found what also helped here was that lots of the rides me and Ad wanted to go on had single rider lines, and you basically got to just walk straight onto the rides as the waits for them were pretty damn long without doing that. It then ensured that my mum wasn’t having to sit with Dylan for a long time because he can get worked up really quickly unexpectedly and then hard to settle.
All of the staff at Universal were amazing, very helpful and just generally lovely people.

 

Hear how our flights went here, and ill be posting more about our visits shortly!

-WeeOhana

 

0

Villa & Swimming!

We stayed in this wonderful villa, it was perfect. It was a five minute drive to Disney World so was really quick to get to all of the parks and being in a villa rather than hotel room meant that it gave Dylan a lot of space to roam and relax in and space for everyone to get time away from everyone.

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There was also a swimming pool which was great. Amellia has always loved going swimming so I knew she would think it was incredible having one right there that she could go in whenever we were home, but Dylan hadn’t ever been to the swimming pool before so I wasn’t really sure what he would think. It took us a long time to get him used to the bath so I hadn’t wanted to push it further with water, especially considering that swimming pools are always busy and full of lots of different noises.

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We put his swimming trunks on and some arm bands and thought lets give this a shot, and he had an absolute blast. After being very cautious at the start and clinging to me he started to realise how fun it was jumping in off the side and splashing around. He also found it really funny to watch his sister jumping in off the side, she has no fear so was flinging herself off the side while singing and then coming back up and going and doing it over again. After seeing how much Amellia enjoyed being in the pool we are now going to get her some swimming lessons because she will really enjoy them, and I’m going to make an effort to take Dylan to the swimming pool to see what he makes of it. Seeing as he enjoys the water and it wont be all a new experience it will just be to see how he copes with all the noises and other people.

Everyone slept well and adapted to the different time zone really well. Having the villa made it a lot more relaxed when we had got home from the parks. It meant my mum and dad could get some peace while the kids got dinner and wound down for bed time and that the kids then had a lot of space to run about in in the mornings.

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It was perfect and I would recommend a villa over a hotel room, having the space, buying your own food, quiet little swimming pool, it just worked out wonderfully especially that it was literally only a 5 minute drive to the parks as well, Kissimmee is perfect place for a villa.

-WeeOhana