Primary School Finished!!

So I officially now have two children who are of Secondary School age! WOW!

 

I can’t believe Xavier has finished Primary Education! Here he is on his very first day!

Well when this day came we had no idea of the challenges we would face further down the line. We had no idea of the stress and heart ache. We knew absolutely nothing about Autism.

I think it was only a matter of weeks into Xaviers school life before I started getting called in to see the teachers after school because of his “behaviour”. It wasn’t so much naughty, it was “we’ve noticed this, we’ve noticed that” and they were growing increasingly concerned. They suggested a meeting with the schools SENCO. Someone had suggested there may be something wrong with him! My boy?? Theres nothing wrong with my son! I remember he had a few “odd” ways but just thought thats just him, I didn’t think anything more of it. We went to see the SENCO and was told she thought our son was showing lots of traits of having Aspergers Syndrome. She told us the school nurse would be in touch with details of a possible referral to our local child development centre. Again, we knew nothing about it. I went home and googled Aspergers. Well he ticked every box!

Lets cut a very long story short. We got a referral, he was assessed, we went back again 6 months later and he was diagnosed with Autism. By this time he was in Year 1. Very lucky to be diagnosed so quickly as I know of a few who have waited and are still waiting to be diagnosed YEARS down the line!

Looking back now I am very grateful to the Reception class teachers for picking up on this…and one TA who was with him in Year 1 on and off,  but thats as far as my thanks goes unfortunately. Xavier should have had LOTS of help put into place, instead I was told he was lazy and he couldn’t be bothered, he was shoved into a corner of the classroom with a screen around him so he couldn’t be distracted from doing his work, he missed playtimes because his work wasn’t done. He wasn’t refusing to do the work, he couldn’t do it…. he needed help and guidance. He was bullied and it wasn’t dealt with. The SENCO told me that now he had this diagnosis there are loads of jobs he won’t be able to do when he is older. Those words will stay with me for my whole life. How is that helpful? How is that productive? She also told me that they wouldn’t dream of applying for a Statement for him until he was in Year 6 and ready to go to secondary school.

It was time to pull him out of there. He left in the the December of Year 2.

I had such high hopes when he moved to the 2nd Mainstream school! I was so excited when a week in to him starting there they called me in and told me that they could see that Xavier has clearly very complex needs and they recognise that he needs help and they would start the Statement ball rolling ASAP! I actually cried!! I was so happy! FINALLY he will get the help he needs and the education he is entitled to! Yes!!!

No! It just didn’t happen! I was spun a web of lies for 2 years!! For 15 months I was told The statement process was underway, they just needed this evidence and that evidence and this report and that report before they could send it all off! It was the most frustrating time of my life. In the mean time Xavier was again, multiple times targeted by bullies, his mental health was impacted in a huge way, he kept threatening to kill himself, he was violent, he was aggressive and he was very very unhappy which was not in his nature at all. He wasn’t learning, he was just being left to his own devices in the classroom, he was given a different support staff every single day that he couldn’t deal with. Autistic children like routine and continuity. He couldn’t handle the amount of children in his class or the level of noise they make, he couldn’t handle the smell of lunchtime in the hall so ate lunch on his own in the office. The list is endless.

Then I was made aware of being able to apply for the statement myself! My god I wish I had known this earlier! I applied for him to be assessed with a 10 page report I had written myself and the assessment was agreed! That 1st process took 2 weeks! Fast forward 9 months and after weeks and weeks of stalking the postman, checking emails, making phone calls and generally annoying the life out of lots of professionals MY SON HAD A STATEMENT!!! I actually cried!! LOTS! I was very nearly broken from this ordeal!

Next hurdle was to get him into a Special Needs School as his ability to cope in a Mainstream setting was non existent.

The named school on the statement is the one the county council are saying he will continue his education in… the named school was the one he was currently in! No!! No way! I couldn’t let him carry on where he was! I had to appeal!

So I started the appeal process and contacted the Special Needs school we had visited previously. This was before he had a statement and they told us they would be able to help Xavier but they wouldn’t be able to take him on without a Statement. They said they’d have him happily but its whether the county would agree. The wait for that decision was a killer! ……. but I did it!! I won my appeal! Ecstatic doesn’t even come close! The phonetical I made to his then current school to tell them I would be removing him from the school, relieved so much stress and upset.

 

Xavier started his current school in April 2015, after the Easter holidays. The school and staff are INCREDIBLE! They care so much, they have taken my boy under their wings and the effects have changed our lives!! All of our lives! He is like a different boy! He is learning, thriving, flourishing, having fun, producing work, trying new things without hesitation, he has friends, he gets party invitations, he gets support, he is learning to swim, he has narrated the school Christmas play infant of a hall full of people! Just WOW! He’s so calm, he’s happy, he laughs all the time, we have no meltdowns, no violence …. nothing. None of the bad stuff! Its amazing and the staff are the ones I have to thank for that! This last year he has had a different teacher. They’ve had a great year, had lots of fun, I’ve been to parents evening and LOVED hearing how well he is doing and how he is progressing. He loves to help out at school. Its just so so great to hear all these positives after such a negative start to his education! He actually won the Year 6 prize for the whole academic year for his efforts! I am so incredibly proud of him! Here he is with his teacher receiving his award! What an amazing end to his Primary journey! He will be upstairs after the summer holidays to begin his Secondary journey!! I can’t wait to see whats in store for him!

Thank you so much for nurturing my boy. He has come so far and couldn’t have done it without you!

 

 

An Open Letter to my sons Teacher

This will probably be a long one and I am already emotional as I type this first line!

From the bottom of my heart I cannot thank you enough for what you have done for Xavier in the last 15 months since he joined this wonderful school. We had such an awful fight to get him there but it honestly is the best school EVER. Even as I walk through the front doors into the main corridor the feeling of calm and happiness washes over me like a huge wave. It is incredible!

I remember my sister was with me when we brought Xavier in for his first settling in session. At this point he was quite upset with me that I was moving him to another school again but was very intrigued. We pulled up outside and he was quite blown away just by the building! We came into the classroom and the other children were just on their way in from playtime. The first one into the classroom was James. His little eyes lit up and he had the biggest smile when he saw Xavier. Both my sister and I were fighting back tears at this point. The children obviously knew Xavier was coming in but he received the most wonderful welcome.

I can hand on heart say that with the love compassion and understanding that you show, it has changed Xaviers life. He has never had that before. He has been branded as lazy or naughty before. You have been so easy to approach with worries or concerns and you have gone out of your way to make sure all of Xaviers needs are met AND more! He is such a happy child now. He is full of confidence, he has friends, he is eager to try new things, there is next to no meltdowns at home now, you don’t even know he is there. Before he joined this wonderful school we had explosive meltdowns and violence due to frustration almost on a daily basis. You’ve not just changed his life but ours too. I honestly cannot thank you enough.

He comes home from school excited!! That in itself was an alien thing before now! He tells me he has been to a cafe and shared a pot of tea with his friend Marlon. He tells me you’ve all had olympic week at school and he has come home with the “Spirit Of The Games” Award! He was over the moon with his trophy. He tells me how far he is getting with swimming lessons!

At Parents evenings we actually have LOTS of work to look at! We used to have literally a few sheets of paper before! His work is incredible! His imagination is just WOW! His school report blew me away! He is for the first time in his school life doing amazingly well! He is learning, progressing and growing! I am so so very proud of him.

He has been on a 3 day residential trip and LOVED it! I never thought I would see the day that he would stay away from home! He had the most amazing time and as you told me when I came to collect him…. He didn’t want to come home!

He honestly is a different child, he is eating more foods and trying new foods, where we struggled to get Xavier in the bath, we now can’t get him out of it! Xavier narrating the school Christmas performance was very emotional and a huge mile stone. He refused to be involved at his previous schools! He is now interested in starting acting classes in September which he has never had the confidence for before!

So Tom, Thank you! For everything. For believing in my son, for understanding him and how he works, for taking him under your wing, for helping him flourish and grow and showing him that school IS fun. For showing me that I was right to fight for him. We will miss you next year as Xavier will have a new Teacher. Its nice to know that Xavier will still see you around the school though. In Xaviers eyes the next teacher has HUGE boots to fill!

Have an amazing Summer!!

THANK YOU!

 

What’s Going On??

Well…. I don’t know where to start!?

Xavier has blown me away!! He is changing so much!

He has been REALLY funny with food textures since he was …. well since he was tiny.

When he first went onto solids he was fine, he loved his grub…. in fact, he loved it so much he would scream the place down when it was finished!

Then when we moved onto small lumps in his food he really struggled and used to heave quite a lot and choked on his food a fair few times as he just couldn’t seem to handle the “bits”. Obviously back then we had no idea about the Autism.

Recently he has been a lot more inquisitive about foods I’ve been cooking. I make a lot of meals from scratch and he seems to want to try things which he never used to. He never used to eat ANY meats apart from mince, sausages or burgers. Other than that he was pretty much a veg eating monster (which is not a bad thing!!).

There was literally a handful of home made meals i could cook that everyone would eat, other than that I have been cooking 2 or 3 different meals a night which is just a nightmare.

I remember a year or so ago I had cooked a half leg of lamb in the slow cooker. Its so tender it literally falls of the bone. One of my favorites! I was carving the meat and he asked what it was and asked to try a bit. So when i had picked my jaw up off the floor I let him try some. He wasn’t keen but didn’t make a fuss and instead of running to the bin to spit it out he ate it and said no thanks. So often he would have a roast and all the trimmings but minus the meat.

Last week was my Mums birthday and Mum and Dad put on a BBQ. Now we know burgers are a safe bet. Xavier loves a burger!! So he had a cheeseburger and some of the other crisps and bits and bobs that were available. Towards the end of the BBQ he wandered into the dining room where all the food was and came back into the garden with a chicken drumstick in his hand!! He tucked in and finished it! I nearly fell off my chair!!!

I HAD to take a photo!!! See! He ate chicken!! 😀 Yes this really is a big deal!

But wait…. it doesn’t end there…

Sunday (19th June) we went to visit my parents first to see Dad for fathers day! Spent a few hours there then went on to Mum in Laws to see Father in Law. Mum in law had said previously she was going to cook us a dinner. I LOVE someone else cooking for me! She does a great job too! So she slaved away over a roast! She cooked a roast beef dinner… as she knows what Xavier is normally like with meat she done him a couple of sausages instead. She by chance asked him when dishing up if he wanted a little bit of beef to try on his plate (both of us thinking he would say no) and he agreed!!! He tried the beef, loved it and asked for more!!!! Blown away doesn’t cover it!! So so amazed!!

There’s more…. YES REALLY!!!

Tonight for dinner I was undecided. I had some salmon to use up that none else likes so I cooked up Pulled Pork and done fries and coleslaw with it for Ed, and both the kids. Again this is something Xavier has never eaten before! I put it on his plate unsure of what his reaction would be. Ed and the kids sat at the table to eat whilst I sorted my dinner out. I turned round to check what he was doing with his dinner and his plate was almost empty! He did finish the whole lot and there was hardly a speck left on his plate!! He loved it!!!

What is going on??!!! This is INCREDIBLE!!! He has changed so much with his eating habits. It’s brilliant! It makes my life as cook so much easier too!! I am so very proud!

Well done Xavier!! I did mention to him that eating all these great new foods would put hairs on his chest!! In true Autism style I then caught him looking down his top!!! HA!!

Annual Review

Xavier last year got a Statement of Educational Needs. This is a legal document that outlines the help and support your child needs in school/educational setting. Not long after Xavier got his statement the whole system changed and it is now called an EHCP – Education & Health Care Plan. Xavier will now be moved over to the new system. This document still outlines support needed at school but also now includes health care issues too! Its a much more personalised programme.

With the Statements/EHCPs they have to be reviewed Annually to keep information up to date and make sure everything that has been put into place for your child is still relevant, if not it can be removed and if there is anything that needs to be added on, the review meetings are a perfect time to do this. You as a parent have a say in what is included in this document.

Yesterday I experienced my first ever Annual Review. It was an incredibly positive experience. I was a little nervous going into it purely because I wasn’t sure what to expect.

There are 4 main categories in Xaviers EHCP. These are: Cognition and Learning, Communication and Interaction, Sensory and/or Physical and finally Social, Emotional and Mental Health Difficulties. So for each of these categories there are targets set out for issues identified in this area. It also lists the things that have been put into place and how Xavier has responded to them and what needs to happen for things to move forwards. It is very detailed.

Xaviers teacher was present in the meeting, the Head of the school, and the annual review co-ordinator. I felt very at home and they had lots of stories to tell me about how Xavier had made them laugh or impressed them. They are blown away with how he has settled into their school so well. I am too! I expected there to be a huge upset at the beginning with the huge change but there was nothing at all. He absolutely adores his new school. He comes home from school with a smile on his face. He is progressing and learning. The staff genuinely understand him and that is so important to me after years or him being in the wrong setting and being completely misunderstood. His confidence has grown massively and he is so happy! I can’t thank the school enough for taking Xavier under their wings and nurturing him and believing in him! It means so very much to me. It really is such a wonderful school!

I am so proud of how well Xavier has taken on this massive change in his life like a duck to water.

 

It’s the Little Things

……that really mean so much!

Since Xavier joined his amazing new school in April his confidence has grown greatly! It really blows me away. It may only be little things to most people but they are huge to me. He can do up the buttons on his polo shirt…. he can put on his own socks… he eats ham… he actually asked me if he could try a pistachio nut the other day. He is wanting to try new things. This evening I had sweet potato for the first time and he tried a bit and didn’t like it but he just ate it and didn’t run to the bin to spit it out. He is becoming more independent with going to the toilet at home. Yes, he is almost 10 years old but he has dyspraxia which affects his motor skills. He has sensory issues too and his toileting issues have been apparent for many years now. He came home from school last week with a Star of The Week certificate for “talking to an adult when he gets angry or frustrated”. I am so incredibly proud of him!

I have been (still am) really unwell lately with my mental health and other things… too many to list here and the last thing I want to do is bore you haha! Izabel has been offering to do little chores for me at home to take the strain off. I think she sees that I am struggling and is being very grown up and really helping me out. Again it may only be little things like loading or unloading the dishwasher or feeding the cats but it all helps. I cannot believe she will be 13 in a matter of weeks! How on earth am I a mother to a teenager? Where did those years go? She is a good girl, despite her usual hormonal strops and I am incredibly proud of her too! She is growing up to be a very beautiful, kind and caring young lady.

Never take the “little things” for granted. I certainly won’t!

It doesn’t happen often…

….but I am proud of myself!

I found out yesterday that I have passed my Open University course! I studied Understanding the Autism Spectrum and I worked so hard on it! Some of it was incredibly hard. I did find it very interesting and could obviously relate to a lot of it too!

It is a BIG thing for me as I wasn’t the most Academic at school! In fact I was not interested in school whatsoever and this reflected in my GCSE results so I am really pleased with this! I am working towards an Open Degree and this is my first course passed!

Not sure what course I will study next… I need to go and have a look and decide!

Quote of the day:

Believe in Yourself!

You Know You’re an Autism Parent when….

I asked this on my Facebook Page and got a fantastic response!! So I’ve compiled them into this blog post! They really did make me chuckle!

You have small Velcro backed laminated pictures all over your house – but can never find the one you need

Bought Dan a pair of size 15 trainers today. Guy serving said ” wow take up basketball you could be the next Michael Jordan” Dans reply ” I can’t be Michael Jordan because I’m me and I’m the wrong colour”

Everything is interpreted so literally

A new lego series = being broke

It is commonplace to say things such as “Stop licking that door handle”, “you can spin, but not near the tv” or “I promise I’m not moving your line of pens I’m just hoovering next to them”

It is quite normal to have a massive cardboard box with a beanbag, space blanket, bubble wrap and starlight pillow in the living room

Your child can name more lego characters than actual people

You can’t smother chips with Ketchup it has to be separate so you can smother each chip individually
And you listen to the same thing being repeated for the thousand time that day

You’ve moved number 47 of my 78 Skylanders. Have you been dusting my room ?

You shout back at nasty comments

Everything I cook for “ME” smells…….so I now have to eat later & on my own!!

Your child can tell you more about Stampy Long Nose than what they done at school!

You will probably slap the next person who says “but he doesn’t look like he has anything wrong with him!”

Your house is being slowly taken over by Dr Who memorabilia!

You wish everyone knew what Statements were so you didn’t have to explain every time

your childs hair has almost grown into a mullet because you just cannot face haircut time!

Bathtime sounds like murder is being committed in your house!

You can’t get away with saying “In a minute” unless you are going to be exactly 60 seconds!

without melatonin your child would survive on about 30 minutes sleep!

You avoid supermarkets like the plague!

There have been lines of smurfs taking over the living room

You can have a full conversation using film dialogue!

A must visit to the library every Sunday just for a DVD and then you are there for nearly an hour before he finally decides which one he wants to take home to watch and then it’s on repeat until we give it back the following Sunday

Your child rocks from one foot to the other repeatedly and you don’t bat an eyelid

You are only allowed to buy “twisty pasta” …bows, tubes or shells are not permitted!

you child LOVES a certain food…. until they change the packet then its a no go zone! No matter how much to try to explain that the contents are the same!

You have to cut your child’s fringe in their sleep because they won’t go near a hairdresser… And the morning is spent trying to gauge if it is straight and then celebrating that it is passable!

I do not want to know the intricacies of mine craft, nerf, YouTube or Lego thank you

Don’t bounce that rubber ball near the TV screen,for the millionth time in ten minutes!

You can speak almost exclusively in SEN acronyms.

Thank you so much to Trish, Alison, Angela, Beverley and Farzana for your input!

Starting to see the light at the end of the tunnel!

Yesterday, with no warning at all, saw me called into school to meet with the Educational Psychologist. This is another good step in the right direction in getting Xavier a Statement. The meeting lasted 90 minutes. I was asked what my concerns were. Well my biggest concern was the fact that I have been told by school that my son isn’t really learning anything. Now school are trying to deny they ever said that and said Xavier is unable to work independently, he needs adult assistance at all time otherwise he becomes incredibly anxious, frustrated and unable to cope. When supervised though he is actually producing little bits of work. These bits of work are not on a par with his peers and apparently the school has completely adapted the national curriculum so much to fit his work in, so much so that it is barely on the curriculum. So all this time I have been given the impression that next to nothing is being produced, then yesterday the SENco had FOUR work books full of work on her desk! Most of it is scribed by his 1-1 worker. His handwriting is very behind and the EP was basically (if you’ll pardon the pun) writing off his handwriting and saying computers are the way forward for him and she is completely dumbfounded by the level of computer skills Xavier has.

She asked about his behaviour at home! So I filled her in with the good and bad stuff. Generally at weekends and holidays he is the calmest person you’ll meet. After school and on Sunday nights he is the most uptight, anxious, angry, aggressive and violent person you’ll meet! Which says to me that school bothers him! He is being picked on at least once a week by nasty kids.

The Educational Psychologist was also trying her best to persuade me to NOT send him to a Special Needs School and to keep him in Mainstream. Her reasons being he is too clever and it will bring him down and he will pick up behaviours from other Autistic children and it could become a problem! REALLY? Well firstly I know my son is clever… shame the staff who work with him are not fully trained to bring out the best in him and help him reach his full potential. Secondly I have had a number a talks with the Head of the Special Needs school I would like him to go to and I’m sure he would be telling me that Xavier is “too clever” for his school rather than telling me that he looks forward to taking Xavier under his wing and helping him progress! Thirdly, I wouldn’t want him picking up some of the behaviour of the kids in his Mainstream school if I am brutally honest!

Then there was a little knock on the office door… I looked round and there was Xavier with his big wide chocolate brown eyes grinning and waving at me. I do love this boy so very very much. I called him in and we had such a huge cuddle! I asked him how his day was going. He said “Yeah, it’s ok Mum! Can I stay with you in here?” when I explained that we needed to finish talking then the EP lady will be talking to him afterwards and that they were going to play a game, he got all upset and was stuck to me like a limpet! I dried his tears and told him he only had 1 hour left and I would be coming to collect him. He reluctantly accepted it and we finished off the meeting.

I asked the EP what she thought Xaviers chances were for getting this Statement and she said that in her opinion it is very likely seeing as the process has come this far. Normally they turn people away right at the beginning if they don’t feel there is a strong enough case. I actually had to hold it together at that point and wanted to cry (with joy!) but I really don’t want to get excited until I have that piece of paper in my hand.

We are again another step closer… I am so very exhausted but I know that this HUGE almost 3 year long in total, battle is going to be worth it.