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All posts for the month June, 2014

Schooling update

Published June 10, 2014 by swanfreddie

Since the beginning of the year there have been lots of meeting taking place about Freddie’s future education. He is due to begin full time education in September and we have been working with all of Freddie’s health professionals to try and work out what type of education setting will be best for him.

Due to Freddie’s learning difficulties one of the first things that had to be put in place was a statement of special needs. This is a formal document detailing a child’s learning difficulties and the help that will be given in school. Once a statement has been requested it takes around 6 months to complete.

The next step was to work out where we would like Freddie to go to school. There were a few choices that we had to think about. Firstly was to send him to a mainstream school.  Our second option was to send Freddie to a school for children with additional needs. Or thirdly opt for a dual placement, where Freddie would split his time between a mainstream school and an additional needs school.
Sending Freddie to mainstream school full time was definitely a no. We felt his learning difficulties were too severe for him to effectively learn in this type of environment, so going to a school for children with additional needs seemed like the best thing.
But over the past few months part of me has massively wanted to look into dual placement. The idea of allowing Freddie to spend some time in a mainstream school began to seem more appealing. From a learning point of view the addition needs school has everything Freddie needs, but part of me began to wonder if mainstream could offer Freddie something as well. Freddie loves being around other children, and is very sociable, and I began warming to the idea that maybe spending one day a week around mainstream children may be good for him.

So I decided to pursue the idea of a dual placement. This idea was discussed several times at the meetings about Freddie, and I was advised to apply for Freddie to have a place at both the mainstream and additional needs school. We would have to wait until Freddie’s statement was completed before we would hear if he had been accepted into the additional needs school(but we were told he should definitely get a place there) but we heard quite quickly that he had been given a place at the local mainstream school.
I was advised that the next step would be for me to go and meet with the mainstream schools senco(special educational needs co-ordinator) We had a good chat about Freddie, what he can and can’t do and what level of care he would need. I explained that I knew Freddie wouldn’t be able to learn on the same level as the other children but that I was hopeful that Freddie would still be able to gain something from attending this school.
I felt like everything was beginning to fall into place, he had his mainstream school place and we now just had to wait for the statement to be completed and hope that Freddie got his place at the additional needs school.

The call finally came today from the special education department. Freddie had been allocated a place at the additional needs school from September. The idea was that he would start off by doing 3 days a week at this school, and we would gradually increase this. We would now need to go and meet with the school and sort out all the arrangements.
But after confirming Freddie’s place at this school the lady then went on to tell me they felt it wasn’t in Freddie’s best interests to pursue the place at the mainstream school as well. They feel it would be better if Freddie just goes to the additional needs school full time, and maybe in the future, if they feel Freddie will benefit from it, then they may explore the idea of spending a few hours at the mainstream school. She explained I can pursue the dual placement if we wish but they don’t advise we do.

As the lady was explaining this to me my eyes filled with tears. That little bit of hope I had that Freddie could manage a few hours a week at a mainstream school, like other children, had been totally dashed. Once the conversation had finished and I put the phone down the tears came. The idea of Freddie being able to do a dual placement had been really important to me and I was so hopeful that everyone else would think Freddie could manage it, that maybe his needs weren’t that severe and he could manage at least a few hours a week in a mainstream environment.
The tears flowed more when 2 minutes after putting the phone down the postman delivered a letter inviting Freddie to go and spend some time at the mainstream school to get used to the environment and meet his new teacher and new classmates. Something that would be pointless him doing now.

I was looking forward to having 1 day a week were things could feel more ‘normal.’ Where both of my children could go to the same school. I was looking forward to 1 day a week being able to walk Freddie to school and help him hang his coat and bag on his peg like I did for his sister, the little things you do as a mum when your child first starts school. Instead he will be taken away in a taxi to his school, without his mum being there on his first day to help him. But Freddie won’t care about any of this! Just me.
I was really hoping our idea of doing dual placement would be supported and encouraged by all of Freddie’s professionals. I was hoping that they would be confident that Freddie would cope with being in a mainstream environment. And while they aren’t saying Freddie can never spend time there, they are saying for now it’s not advised.

So after a good cry I did manage to pull myself together! Time to focus on the positives. The additional needs school will be amazing for Freddie. They have some fantastic facilities including a hydrotherapy pool and a sensory room which Freddie will absolutely love. Who wouldn’t love to spend their school days relaxing in a hydrotherapy pool?! It may not quite be the journey we wanted Freddie to go on but I’m so excited that come September Freddie will have the opportunity to attend such a great school.

Freddie turns 4!

Published June 1, 2014 by swanfreddie

I love birthdays, particularly a child’s birthday. I love seeing the excitement on their faces when they are opening their presents and the way the day is so magical to them. When it’s Freddie’s sisters birthday we always make plans  to go somewhere nice for the day, we have a special tea, a big birthday cake and mounds of presents. But when it comes to Freddie’s birthday the day is very different.

Freddie has no understanding of what a birthday is which can make celebrating it hard. We don’t do the trips out with him as he doesn’t enjoy them, we can’t plan a special tea or have a birthday cake as he doesn’t enjoy food and buying presents for him is hard due to his developmental delays.
I spent the past few weeks leading up to Freddie’s birthday feeling a bit down over it. I wanted to give him the birthday he deserved, I wanted him to be able to have a special day. I spent too much time in the lead up to his birthday wondering what he would be like if he was born without a syndrome. Wondering what he would be like if he could walk and talk. Would he want a bike for his birthday and a big chocolate cake? Wondering how excited his face would look when he woke up and saw his presents.
But there’s only so long you can feel sorry for yourself for before you have to pick yourself up and carry on. So instead of moping and wondering what could of been with Freddie I tried to plan him the best day I could. So here is what we did for Freddie’s 4th birthday –

 

After searching and searching endless toy shops I managed to find 2 toys I hoped that Freddie would like. He was unable to unwrap the presents himself(I think next year we might be best to not wrap them) but his sister was more than happy to help him.  He got one toy that spins(Freddie’s favourite thing!) and shoots out balls when the top is pressed and the other was a car that shoots off when you press the button. Freddie isn’t able to press the buttons himself but he certainly enjoys watching them.

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To try and help Freddie gain an understanding of what a birthday is I made him a birthday sensory box. It was full of wrapping paper, bows, ribbon, party hats, candles, party blowers, balloons and streamers. He had a good rummage through that, exploring all the different items.

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Freddie loves balls and sitting on his trampoline. So we thought we would combine the two and fill the trampoline with all his balls. He loved sitting in the sunshine pushing all the balls around.

20140601_120030Seeing as Freddie is very limited to what food he can eat it is pointless giving him a birthday cake. So instead we tried to make him a sensory cake. Made with playdough, bouncy balls and sparkles!

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20140601_154916This is what he thought about his cake! –

But we did also make a chocolate cake for mum and dad to eat! He loved being sang happy birthday to, but definitely wasn’t going to even taste a little bit!

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Freddie played with his big soft blocks.

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One of  Freddie’s favourite things is a bath. He loves being in water and having a good splash. So we bought him fun things to have in his bath and some bath foam to get messy with.

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We then chilled out with some sensory lights and sounds before bed.

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So that’s another birthday done. Another year older. And while it may be another birthday passed with Freddie unable to walk or talk and while we will always feel a sense of sadness over this we are incredibly proud of the little boy he is growing up to be. Our little smiling Freddie, who has the ability to win over even the coldest of hearts.