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

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

Disability Passes in Universal & 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

 

1

Flying!

I was rather worried about the flight because Dylan has never been on a plane and although Amellia has been on a plane it was only ever for short flights. Amellia is a high energy kid so sitting still is not her strong point so I made sure I had a bag packed with lots of new and exciting things for her & Dylan, you can see what I had in them here.

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We were flying from Dublin airport and they were more than accommodating, we got checked in easily and got to go through the priority lane for security which made things less stressful for Dylan as we didn’t have to que up. I also brought Dylan’s melatonin with us through the security and with it being over the 100ml I had a doctors note with me, but they said that wasn’t necessary, all they had to do was check the medicine in the machine and that they wouldn’t take anything of a child that is a necessity to make there travels as stress free.

We got to bring the buggy with us right up until we boarded and it was ready and waiting for us as soon as we got off too which was great. Everyone in the airport were amazing, friendly and more than accommodating but that than changed when we got on the flight.
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We boarded first and as soon as we took the first step onto the plan Dylan lost it. In hindsight we should have boarded last so we weren’t sitting on it while everyone else walked past us, but we thought if we got on first he would have time to settle, but he did not. The flight attended did not help the situation at all. Dylan was clearly visibly upset, he was screaming, tears running down his face and he just wasn’t a happy bunny at all. He insisted that he had to sit in his own seat and I explained to him that he was autistic and did not understand what he was saying to him but he kept saying to him, its only for five minutes, you have to sit in your seat. I tried to put him in his own seat and this obviously just made him more distressed. I had my mum on lookout then for when that flight attended was going to walk past as there was no way I was going to make Dylan stay in his chair. I was in tears with how upset he was, it was horrible.

I gave him his melatonin to try and get him to sleep because he was not happy and nothing was settling him, after his melatonin he got a little distracted doing stickers which helped him settle for a few minutes at a time, he then ended up crying himself to sleep and then slept the rest of the flight. I managed to get a little bit of a kip but not much as he was very fidgety and kept waking for a few minutes and needing reassured then went back over.
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On the flight home Dylan was more or less a sleep before we got on the plane so was perfect. I sang a few songs to him on the plane and he quickly fell asleep and slept the whole flight, night time flights are the best!

Amellia was an absolute gem. She was far too excited to sleep on the flight over and was having lots of fun going through everything in her bag, watching movies and chatting to grampy. She then decided to fall asleep.. 15 minutes to landing.
On the flight home she was wonderful again and we had a far nicer flight attended, she spent ages chatting away to Amellia and even brought her a special kids dinner too!
After having some food Amellia then curled up on nannys knee and fell fast asleep for the rest of it!

So; if your flying, make sure you pack a lot of different things in your bag that you know your kids like, if they have special needs make sure you make the airport aware of it, show them pictures and watch videos of airplanes to try and help them understand what is going to happen and hopefully you get a nicer flight attendant than I did on the flight out so they will be understanding!

-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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39

Zimpli Kids product review & giveaway!

My kids love some sensory play, so when Zimpli Kids got in touch with me asking if my kids would like to try out a few of their products and do a giveaway I jumped at the chance.
When Amellia got home from school I told her that she had some items she had to do a review of for my blog and she couldn’t wait to see what we had been sent.

IMG_3123As soon as she saw the Gelli Baff she was busting to try it out, apparently all the ‘cool’ people she watches on YouTube have been doing it and they all love it so she already had high expectations for it! I had my fingers crossed it would live up to these expectations so that she wouldn’t be disappointed.

IMG_3137Does this look like a face that was disappointed?
She had an absolute blast, and really enjoyed herself. She thought it was absolutely incredible, I on the other hand was worried it would be very messy and a nightmare to clean. By some miracle though she kept it all in the tub and it came with a little packet of powder you poured into it to turn it back in to water which happened almost instantly when you put it in and a huge plus is that it is 100% biodegradable. It also smelt amazing and is even ok to use for kids with sensitive skin!
The downfalls of this product is that you cannot put your head into it.. and that she now wants every bath to be just like this one!

The next day we also used the Crackle Baff which Amellia & Dylan could both enjoy. They smelled really great and cracked & popped for a lot longer than I expected. Both kids really loved these too.

On Saint Patrick’s day we decided to go with the green theme and try out the slime that we had been sent seeing as it was green.
IMG_3888I wasn’t quite as impressed with this. Amellia had a blast, but to start with I used half the amount of water that they suggested.. mainly because I wasn’t sure where I would get a container big enough for what they suggested so I thought we would try it and just have really thick slime. It took it a very long time to get to a slime like thickness & was still rather runny, but Amellia really loved it.
Dylan refused to touch it.. he’s not that into messy play.

She played with it for a long time, and as the day was reaching an end.. it ended up all over the kitchen floor. Fortunately we have tiles.. it’s not something I would want to tidy off carpet. It wasn’t too bad to tidy thankfully! I threw a few towels over it and then stuck them in the wash after making sure it was all soaked up as it did make the floor very slippy.

All in all we really enjoyed the products and if your kids are into messy play I would really recommended trying some of their products out.
If you fancy winning some enter my give away that is running until the 4th April 2018.
This giveaway is only open to people in the UK & Ireland. Good luck!

 Click Here To Enter

-WeeOhana

 

*_* These products were sent to me free of charge to do a review & Giveaway. All opinions are my own honest ones.*_*