Good News – We are getting a statement.

We received some really good news today from the SEN education department at the council. An e-mail confirming that Charlie will be getting a statement of special education needs, and that for now they will be naming his current school in the statement.

For anyone who is not in the UK, a statement of special educational needs is the legal document which sets out the help a child with additional needs must get in school and without which it is impossible to access special education.

We are so pleased to have gotten this far so quickly. I know lots of parents are being told that its impossible or unnecessary to get SEN statements or that their children’s needs are not severe enough, so I just want to write this to encourage you to keep fighting and keep trying because its not impossible.

I want to say a huge thank you to our advocate Stuart from S&A Education support who has been supporting us through this whole process, and without whom I don’t think we would have made so much progress.

I’m so happy that Charlie can stay in his current school, until a place becomes available in the specialist ASD school, he is so happy and settled in there and is really doing very well. The staff and the management are amazing and we are slowly getting to know some of the other parents which is great.

I was surprised how relieved I felt to get the news, I don’t think I realise how much the stress of not knowing what would happen next was affecting me.

I think I will sleep well tonight –

Sarah x

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Finally, I have a food thief

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Yesterday the funniest thing happened, I was sitting down with a cup of coffee for 5 minutes and I decided to have a sneaky treat. I just love these yummy caramel waffles and have found that I can buy the in Aldi at less than half the price of some of the other places that sell them .

I was just tucking in to my moment of self indulgence when I heard Charlie’s little voice say “ooh, I would like to try some of that mummy!” When I got over the initial shock I handed him my treat, he took a really small nibble of the edge and declared that he liked it, and that he would be eating the rest of it.

So it was goodbye caramel waffle and hello food thief.

My husband remarked how it was just like having a one year old who suddenly became interested in pinching his parents food. Charlie has never done that before and so missed out completely on that eating milestone. I remember when he was small telling the professionals “he doesn’t steal food from my plate” I wonder if they understood that this is something kids are supposed to do?

Charlie has made great progress this month trying out different types of breads. Last week my lovely friend bought him a new type of mini gingerbread man which he asked if he could try this morning, he enjoyed the packet he had and has taken another 2 packets to school with him.

Last week his teacher told me that he had taken the class to the park to feed the ducks, he gave all the kids 50:50 bread to use, but instead of feeding the ducks all the kids including Charlie ate the bread and the poor ducks went without.

So onwards and upwards…Let hope he keeps going with his new found interest in other people’s food.

Special schools for special kids?

I wanted to write this post because I have come across a few parents recently both in real life and on the internet who are in the process of deciding on a school for their special kids. I see fear in their eyes and hear it in their voices, and I know, I really know because I was there too, no so long ago. In a place where you have to make a decision with so very many unknowns, and such huge potential consequences.

There is so little known in the wider community about what special school are like on the inside, and I keep seeing that for those who don’t have children in special-Ed there seems to be a fear of these schools, at best that these school will hold our kids back or at worst an impression that they are like 19th century institutions.

Choosing the right school for any child is a tough decision, there are so many variables and unknowns, and every school and every child is different and has different needs. I admit that the idea of not sending Charlie to the same school as his sister was extremely painful for me. Last spring during a very well managed ‘transition’ we went to look at Charlie’s current school 5 times on the first 3 occasions I cried.

This wasn’t what I imagined our lives would look like, it wasn’t the dream I had of my kids being in the same school, with their wonderful little cousins, growing up together sharing experiences and teachers.

This wasn’t at all how I imagined things would turn out.

But, at some point I had to get beyond myself and my dreams and see that what was best for my kids, might not look like my dream.

There is a strong push to keep our special kids in mainstream education for as long as possible. Some children really are better off in mainstream education, in large classes, and busy lunch rooms, with lots of opportunities for interactions with lots of different people. And some schools can make inclusion work really well, others can’t and the kids suffer as a result. I’m often asked, couldn’t he cope in mainstream? I’m sure he could ‘cope’ but who wants to cope? school isn’t about coping its about living and learning and making friends and having fun.

For us, even though Charlie had enjoyed his time in mainstream nursery, I had to think long and hard about how much energy I had left in me to fight for help for him in school. How much energy did I have to be the one supporting the school and helping them to understand his needs. And so as painful as it was we took a leap into the unknown and accepted the place we had been offered in an assessment unit of a special school.

Charlie’s term dates are longer than Lillie’s, she is a little star, and on his first day, even though she wouldn’t be going back to school for a whole week, in a show of solidarity and to help him understand what was happening she got up and put her own school uniform on. We all took him and dropped him off for his first day at his new school.

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Charlie had only been there a few days when the head called, to tell me that she was “interested in Charlie’s sensory processing disorder” and that she had organised for a local specialist OT to come into the school to train the whole staff on sensory processing! I cannot even put into words how different this felt. For years we had been in a place where even the special needs coordinator would tell me that because Charlie was well behaved and compliant had no difficulties. She once said ” you will never get a diagnosis” and would tell me that sensory processing disorder is not a recognised condition, that there were no funds for additional support even for children with a diagnosis of ASD or that other children needed it more.

This school is as different as night is from day, they have taken his sensory diet and are using it enthusiastically. They bought him a mini trampoline, out of school funds, to use in the classroom. They have agreed to give him protected lunch times where they will only offer his his safe foods, and one to one support with exploring new foods at other times.

Charlie has been in the assessment unit for 6 months now, it is managed by a special school and run just like one. The have small class sizes, and helpful friendly staff. I have to say that although hard accepting a place there was one of the best decisions we have ever made. Charlie is making great progress, both academically and socially he loves the school and he has lots of friends.

A few weeks ago I was struggling with something else, and to get out of myself I decided to write to Charlie’s school to thank them for everything that they have done to help and support I am sharing this letter, because I wanted to help anyone who is considering special ed to be a little less fearful about what the future may hold.

Dear staff

I just wanted to take a minute to write and say thank you so much for everything that you are doing to help and support our son. To let you know how happy he is at your school, and how this is having such a positive impact on our family.
Before we came to this school we had become accustomed to having to fight tooth and nail for every little tiny accommodation, we were given no extra support, and even the people who were supposed to be on our side would let us down failing to turn up for important meetings, not keeping to written agreements they had made with us and not returning phone calls. We often felt that nobody listened to our concerns or took them seriously. I know many many other parents who are still in having these kinds of problems and I have to say that the staff at this school make a very refreshing change to this situation.
Each member of staff that we have met has always treated us fairly, they have done their very best to listen to our concerns and help us. The staff are relaxed and competent, friendly and helpful. They always have time to stop and talk with the kids and parents. They never come across as defensive, too busy or uncaring. The children in the school reflect this positive attitude, and our son has made great progress in many areas of his development since joining you. He has become much more confident and his ability to communicate has improved significantly. It is a joy to hear him talk about “all his friends”. He loves going into school and I know that he feels safe and happy in there and he is learning lots of new things everyday.
We are grateful for the fact that the teachers and staff treat all of the children as individuals, and that even though there are children in the school with far greater needs than our son they never dismiss my concern’s or his needs as being insignificant. This is especially important to us because his disability is kind of hidden and not obvious when you first meet him and we are regularly faced with disbelieving uncaring attitudes. We want to say thank you for the efforts you have made to both understand and accommodate his sensory processing difficulties. For the training you organised for the staff, the equipment you have provided, and the extra support you have given him with his eating.
We are grateful to Mrs K who is supporting us in finding a suitable place for our son to continue his education when his time in the assessment’ unit comes to an end. We hope that when he does eventually move on at some point in the future that he will be as happy as he is here and will receive the same high quality care and teaching, although I have to say that this school will be a very hard act for any other school to follow. We want to say how we are both thankful and relieved that Mrs K helped us to finally see an educational psychologist, after 2 years of us banging on doors and getting no answer, having the report from the educational psychologist is like having a missing puzzle piece that we have been desperate to find.
We are also grateful to Mr D, Charlie’s teacher, for the love and care he shows the kids, for all the hard work and attention he put into their education. It is a delight to see how he engages with the children and how much they love him. It is great that Charlie has such a positive male role model during his early years education.
We have found this caring attitude from the school staff extends even outside of school hours. One night we were struggling to find ways to encourage Charlie to eat in Mcdonalds. When Mrs H one of the teachers from blue group arrived in the restaurant with her family, she very graciously took time out of her family meal to sit with Charlie and encourage him. It is hard to put into words how much something like this which may seem small, actually really matters.
Please be encouraged that you are doing a very important job and in our eyes you are doing it very well. Whilst we know that this is what you are paid to do we also know that positive attitudes, love, care and understanding are things that money cannot buy. Being part of this school is a huge blessing to our son and to our whole family.
Thanks Again
Sarah, Will, Lillie and Charlie
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Funny blue bird

Good news everyone, today we have welcomed a new member into our household.

His name is currently “Funny Blue Bird” as we let the kids name him, I think we may shorten it to “Blue” at some point in the near future.

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After school we all went to the pet shop together to choose him

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It was VERY noisy in the pet shop

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We had to buy him some food and a toy

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and be responsible for carrying the box carefully with 2 hands

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We had to take turns

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We welcomed him to our house…

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And showed him his new cage

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The cat is very interested in her new house mate.

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Welcome…”Funny blue Bird”

What can you tell me about your child?

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This week we were invited to have a look at an ASD specialist school as part of the process of being assessed for a statement of special educational needs. Whilst we still hold out hope that Charlie will be able to attend the same school as his sister at some point in the future we have to consider that there is a possibility that Charlie may be better off learning in a specialist environment rather than in a mainstream school.

The school was beautiful, and much more peaceful than I was expecting, I was particularly impressed especially by the quality of the older pupils, and their confidence and ability to speak to us and articulate their thoughts, even when I put them on the spot, in front of their teachers asking them questions about what the best and worst things about their school were.

They have a very high staff to pupil ratio, and great facilities for the kids. Also as its virtually impossible to access any statutory early intervention or therapy outside of the school system, then we will have to give this place some serious consideration.

When we arrived we met the headmistress in her office.

As we sat down she asked us to tell her a little about Charlie…

A while back I was given a similar question by a specialist teacher, she asked me “what is Charlie good at?” Looking back, I feel so ashamed to say that the question had stumped me for a few seconds. As parents of special kids we get asked so many times to describe our kids in terms of their diagnosis, difficulties or the challenges that they are facing that these questions, although more emotional, somehow become easier to answer. As we walk this road we become so much more fluent in giving answers about what they can’t do rather than what they can do.

After gathering my thoughts I told her that Charlie was good at paying attention to detail, befriending children who are shy. He is good at building with lego, following rules, making people laugh and using a computer, he can swim like a fish and run for a long time. The list is goes on further, but I wonder how few times do I actually speak it out?

Given the situation on the day and the type of school we were visiting, It would have been easy at this point to start by detailing all of Charlie’s challenges, after all how else would we have got to this point? To this day, and to looking around this school? Maybe she wanted us to justify why we were there, maybe I needed to justify why we were there.

But at that moment I felt a check in my spirit, Charlie is far more than his diagnosis and far more than he challenges we have faced as a family over the last few years.

Suddenly in that moment it was so clear to me that to have started the day by describing him only in terms of his autism would have been selling him short.

So instead I started by telling her how he is cute and funny and bright and confident, how he is super friendly, I talked about the things that he loves, his Lego and ninjas and angry birds. How he is happy and well behaved in school and how is his making great progress with his learning.

Only after I had told her what a great kid he is, and made sure that she knew he would be an asset to her school, I added that he has a diagnosis of ASD and that his main challenges arise from Sensory Processing Disorder, and how he thrives when he is in an environment where is sensory needs are met.

As the morning went to there were plenty of opportunities to talk about autism and how it has affected our lives and how we hope that the school can meet his needs, and offer him the kind of support he is getting in his current placement.

Charlie wasn’t with us on the day, but I know in my heart that if he was and if he had heard me speak he would have felt proud to be himself. Knowing that his autism is a part of how God has created him and that we are proud of all of who he is.

I think they have got the point

Ok so after last week’s meeting with Charlie’s class teacher and classroom assistant when I wrote this

 “Even though in the meeting I asked for consistent, clear, accurate written communication around food the next day when I collected Charlie another classroom assistant announced that he had eaten Jelly (Jello) in class. I was shocked, “Jelly? I asked, “did he really eat jelly?” she said yes, so I pushed her further, “what colour/flavour/consistency/brand did he eat? How was it served? Was it in a bowl with a spoon?” “Oh” she replied, “he didn’t eat Jelly, he ate jellies, I mean sweeties like haribos”. He has eaten Jellies before, now Jelly is a whole different sensory experience, it is wet and wobbly and unpredictable, had he eaten Jelly I would have been pleased, no more like ecstatic, instead I just went away annoyed about the poor levels of communication”.

On monday of this week I had a far more successful meeting with the head of the school. My new parent advocate was with me, which was great as it means that I have a witness should anybody change their mind as to what was agreed.

The head is really positive about sensory integration, she did one of the Shine SPD training days in the spring and has made SI a priority area for staff development this year. She paid for Shine to come into school and train the whole staff on their last inset day. She was great and was really open to listening to what I had to say. I was very impressed with her.

I said that I understood that our priorities were different, I prioritised nurture, feeding and sensory whilst she was prioritising education, but she said that she understood that without my priorities being in place that Charlie wouldn’t be ready to learn anyway so she wanted to work with us to get that right first.

She agreed to all of my suggestions for how we could work together better from now on.

One of the things we discussed was my request for clear accurate, written communication around anything to do with food or feeding. She agreed and said that she would pass onto the classroom staff how important this is to us.

This evening I received this note in Charlie’s link book

“At 11.30am Charlie said he was ‘starving’ and he ate a full bowl of ASDA smart price crispy rice cereal. He ate all of his packed lunch and ate an ASDA Smart Price rich tea biscuit instead of decorating it with fireworks icing!”

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I think that they have got the point!