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

 

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

CDC Again..

Think this was our 4th, maybe 5th CDC with Dylan. When I was told that it would be a different paediatrician than my normal one who has seen Dylan since he was 16 months old I was a bit annoyed. I was told that they didn’t know when she would be back in so I obviously took the appointment that was offered to me to help to progress through everything.

Whenever we attend any appointment with Dylan we tend to wait in the car until two minutes before the appointment to go in. This is due to Dylan getting extremely worked up if we have to wait in a strange room with other people in, so we have found that this is the best way to ensure that he keeps nice and settled before hand. When we went for this appointment though they were 20 minutes late. Dylan waited a lot better than he ever has at the very start but then he started to get more and more anxious and after 10 minutes I was back to doing the usual of walking up and down the hallway trying to stop him screaming and to calm him. Ad went out to ask them what was going on and was told that at the start of every CDC they always discuss for 20 minutes. Now I have been to my fair share of CDCs and this has never been the case and was even more frustrating knowing that they were in that room beside the waiting room with the two-way mirror being able to hear and see how worked up Dylan was getting.

Eventually they came to get us and it was the new paediatrician that we hadn’t ever met, as soon as we sat down she asked such a ridiculous question especially seeing as they had supposedly been chatting about Dylan for the 20 mins we were waiting .. she started off with-

So, what are you concerned about?”


I just started to cry. Not huge sobbing crying because I was keeping myself together in front of everyone but I looked at her and replied with one word – Everything. 

I composed myself a little, but I did go on a little rant. I wasn’t mean, or rude I just expressed how frustrated I was by everything that is going on. To be honest I think I have every right to be frustrated and everyone in the room said at the end of my little rant that they could honestly understand why I was so frustrated.
Dylan was first seen at the children’s centre when he was he was 16 months old, he was referred at 13 months old. Even from the very first appointment we have been told that he is autistic and that he would need to attend a special needs school.
When we first went we were told that it is great that Dylan got referred so early as Early Intervention can make a huge difference to a child… but we have seen none of that. Not a single thing until very recently when speech therapy started 2 weeks ago.
We have also been told that the waiting for an official diagnosis is a lot longer than it is meant to be. You are meant to be seen and have the diagnosis within 12 weeks of doing the parent interview… we have been told that it will be a 9+ month wait.
I mean, we need this official diagnosis as much as professionals keep telling us that he is severely autistic my heart and mind are going through daily and sometimes even hourly battles over this. This is destroying my mental health, putting huge strains on our relationship and causing out family to suffer.

We were told that he may not get a place in a special needs nursery because the wait list at the moment is really long to get official statement done and we were told to not get our hopes up for him to get a nursery placement.
I mean COME ON!! We were apparently referred at the earliest stage possible to the education board so that we could get this done and sorted and not have to fight and wait for this like everything else, but now we have been told this. What the hell else am I meant to do?

Everything is just not right and something needs done about it.
Who can I contact for help?
I need this all sorted so I can then concentrate on sorting myself so I can be the best mother possible to my kids, to know how to help Dylan the best I can… This isn’t fair on our family and many others I know going through this.

Also, to add, Dylan needs a new high chair, he is too heavy for his current one and without being strapped in Dylan will not eat food. He does not seek food or enjoy food, but the NHS will not provide us with one or even help us to get one because it is classed as a restraint. Same as a car seat, its classed as a physical restraint but they have told me that they know Dylan needs one as he escapes from a seatbelt and that it isn’t safe.
Since when did a child’s safety & well-being stop being the main concern??

Sorry I went off on a bit of a rant… but I hope you can understand why, and if you know where I can go for support and advice to push these things further forward please do get in contact. 

-WeeOhana