A Family Movie Trip

The cinema for me is like a safe haven.

I get to sit there in the dark, enjoying a good movie (well mostly good) and be around people without the pressure of having to talk to anybody which for me is always a good thing. It used to be that I would happily go to the cinema alone and would see several movies a week, that was before the anxiety took over and I stopped leaving the house alone, so now I look forward to going with Ant whilst J goes to his Grandma's.

I want the cinema to be something J can enjoy too, but a movie can be hard for any child to sit through in full, without adding in Autism, ADHD and sensory issues, which can take the formerly safe haven cinema trip to a stressful trip. Trying to hush him, trying to keep him in his seat, hoping he doesn't interrupt the movie for everybody else and spoil it for them or have them telling us to be quiet and feeling like we have to leave - my worst nightmare.

Then a few nights ago my friend messaged me reminding me I had some codes for cinema tickets to claim and that they had to be claimed that day but could be used any Sunday for the next 3 weekends. So I had a look at the cinema listings for a Sunday, and there it was in big bold letters

AUTISM FRIENDLY SCREENING - the lights are kept on low rather than fully off, the volume is adjusted, and it's much more relaxed allowing for movement and noise from the audience.

I mentioned to Ant that they were showing Smallfoot and he was willing to give it a go so I booked it.

The Autism Friendly Screenings are general admission which means you can't choose your seats at the online booking stage, which I will admit sent me into a mild panic as I like to know exactly where I am sitting and know that I won't have to sit next to anybody else (apart from Ant or J) I was also worried that it could be super full and we wouldn't find seats or be able to sit together so we set off a bit early - one so we could get there on time as the Abbey Dash was on and there were a lot of road closures near us, and secondly to make sure we got seats.

The Cineworld at White Rose Centre Leeds is a fairly new addition to the shopping centre but it's fast becoming our favourite cinema despite there being a Vue only a mile from our house.

As we entered the cinema foyer they had a Grinch Snowglobe set up which J and Ant both had a quick turn in although the picture didn't come out brilliantly. Then we showed the digital ticket on my phone and were shown to our screen. We were the only ones in there for several minutes which gave J a chance to decide where we should sit (with much guidance from Mama) before approximately 10 other families came in in dribs and drabs.

The good thing about Autism Friendly Screenings is there are no adverts or trailers. You are straight into the film.

Smallfoot was a fantastically funny film that me and the boys really enjoyed. Lots of laugh out loud moments and speculation between me and Ant as we tried to deduce which actors voiced which character. After about one hour a lot of the children became restless - a few audible noises, moving in their seats, one little one walking about - but it was all ok. There was no trying to shush the children or tell them to sit down, keep still, be quiet. It was relaxed and meant we didn't need to worry when J started his rocking in his seat and we could still enjoy the film.

Overall it was a great experience and has made me really happy that I get to share my love of the cinema with J. We can't wait to go see the new Grinch movie in a couple of weeks time.

When coming out of the cinema to head back to the car we spotted one of the White Rose Centre's Christmas Displays - a giant Mickey, Minnie and Pluto. J likes to tell everybody Pluto is a dog, not a planet, so we stopped for a quick photo opportunity and a play on the park before heading home.

Where's Your Head At?

This post has taken the best part of a month to write. I wrote bits, I deleted bits, I spilled every little thought that was in my head when I felt I couldn't say them out loud and then I wiped the slate clean because I didn't think anybody would want to listen to me, or would understand.

I was asked earlier this month 'Where's your head at?' and ever since all I've had stuck in my head is the music video from Basement Jaxx with the monkeys in the science lab. I wasn't able to answer the question at the time because I just couldn't find the words.

July has been a little bit turbulent and a little bit stressful.

It started with a Next Steps meeting with the school and SENSAP. SENSAP stands for Special Educational Needs Statutory Assessment and Provision team.

A quick recap and some terms:
Earlier in the school year we applied for an EHCP for J (Education Health and Care Plan) which would provide a plan that would set out what help and support J needs whilst in education. Due to miscommunication on SENSAP's behalf we were declined an assessment. I contacted Sendiass (Special Educational Needs and Disabilities Information Advice and Support Services) who assigned us a case worker who knows all the policies and is able to offer me advice. The lovely Imogen came out and we looked at our options which were - appeal, mediation or reapply. We decided due to it being a miscommunication that we would reapply. This time Lydia the SENCO (Special Educational Needs Co-Ordinator) from school added as much info as possible to our application and me and Imogen got together and wrote a statement about what Jake wants and needs. This time our application (which was about an inch and a half thick and very very thorough) was sent to MAP (Multi Agency Panel) and myself, Lydia and the Headteacher met with the panel made up of Educational Psychologists, Social Workers and caseworkers from SENSAP to argue our case - and it was a bit of an argument as I wasn't leaving that room with a no. The MAP eventually agreed that they thought J may need more support and they would look at reports as well as assess him and decide if he needed an EHCP and that would be determined at the Next Steps meeting.

Fast Forward to now and we get to the Next Steps meeting and I am told they have done their assessments and J definitely needs an EHCP - Hooray! We read through the draft plan which has been put together by a caseworker from SENSAP and make some suggestions on edits as I have 15 days to confirm the plan and then we get to the elephant in the room:

 The School Setting. 

It has been very apparent to us for a while that KSS wasn't a suitable school for J and that he would need to change to a different school. Which isn't an issue apart from the caseworker was going on holiday in 7 days and schools broke up for the summer holidays in 10 days. Time was of the essence. 

One big thing that worried me was that I didn't think it would be a good idea for J to go back to KSS in September and transition to Year 1 to then be pulled out and have to transition to another school, yet the SENSAP case-worker said he thought J would be there till December! A school already noted as not being suitable for him! Both myself and the Head objected and said this wasn't acceptable. Without being harsh the Head said he didn't want J back and that we needed a new school ready for September. As devastated as I was to hear that because I love KSS I had to agree. 

Me and Ant visited a local SILC school which is a Specialist Unit attached to a mainstream school, a couple of days before the Next Steps meeting and we were really really impressed and so I mentioned this and was told it was full so not really a possibility. Crap. They mentioned several other schools but they were all specialist only provisions and I will admit I was put off. J hasn't got a formal diagnosis yet and because he's not been able to be in a classroom setting none of us really know his full academic potential so I was a little worried a Specialist only Provision would be putting a ceiling on him and stopping him from reaching his full potential. I will be honest now this is purely due to my own preconceptions based on a unit I worked in when younger which dealt with extremely disabled children and they didn't do academic learning which is something I still want J to access. 

I agreed to consider them though but in the meantime I rang the school we had visited and asked if I could take J up to look as if he liked it we could name it and ask the LA to make adjustments to accomodate him there. This was where things kind of went a bit wrong. Just a few days earlier me and Ant were convinced this was THE ONE and then I took J there and he hated it. I can't really explain what was wrong with it, I've even said I'm not sure if they were trying to dissuade me due to being full but something just didn't feel right.

 J was very vocal about the fact he wouldn't be going there and so I relayed this to the SENCO who mentioned another school that had received a preliminary copy of the EHCP and said they had a space and could meet J's needs. They are a Specialist Provision and sounded fantastic on paper, the only issue being they are 8.5 miles away and as I don't drive and rely on help from family to help me get J to and from school or a mix of walking/taxi's that was going to mean we will need to apply for transport from the LA. I also worry that if he is there and something happens I won't be able to get there as quickly as I could KSS. I kept an open mind though and I agreed to go have a look.

A learning mentor from KSS went with me to look at the school and we sat in the entrance waiting with two other parents who were looking at sending their children there. I was nervous and still doubting, especially as I now knew this was my only choice. Then, Sam appeared. Sam is the Primary Manager at the new school and just his introduction to us to say hello changed the mood in the room. He was lively, bubbly, passionate, warm. He showed us round the school and you could see how much all the staff enjoyed their jobs and what they did. I loved that they had rebound rooms and sensory spaces and wildlife gardens. I met children who went to the school and they made me smile with the things they were doing and saying and I had such a great feeling about things that I was sure this was it. But, I'd felt that way before and so I needed to make sure Ant and J felt the same way.

Ant is very much in denial about J and how he is, and so is my granddad. They both dismiss any talk of autism and just say he's a bit hyperactive. I'm not sure if it's because it dents their male ego's but Ant was very much anti-specialist school and wanted to send J to another mainstream school and so I needed to get him on board. I arranged for Ant and J to go view the school and so we met up on Ant's lunch break and Sam showed us all around, and I saw Ant melt the same way I had earlier in the week, I saw him warm to the school and by the end of our visit all three of us were in agreement that this was the one.

I quickly emailed the SENSAP case worker confirming this was our choice and hoped I was in time but I had no reply and it was a waiting game. Imogen has checked the online system and says that the new school has been notified of our choices but I'm still waiting for any formal notification. I hope it comes through soon.

The whole process has really taken it's toll on me both physically and mentally. With my health issues having a week where I was having several meetings a day with different professionals, rehashing through all the negatives about J really exhausted me and it even got to the point I was having nosebleeds from being so run down. Mentally well, what can I say, I suffer with depression and anxiety and I was on high alert for most of the month, constantly questioning myself about my choices and actions, worrying I was a bad mum, worrying I was failing J, crying, feeling numb, having panic attack upon panic attack and having nobody I could talk to because I felt like such a bad person. I felt broken and sad and I struggled to do normal things, although I'm still having dark days the start of the school holidays has really helped.

Summer is long, and it's hard keeping J active and occupied but the pressure of no meetings, and no school, and no having to make choices that massively impact my sons future is nice.

So that's where my head is at. Muddled but clearing. 

The Right Tools For The Job

From the moment you see that blue line on a pregnancy test you start to plan out your childs future in your mind. Your wants and hopes for them, how you expect their first day at school to go, what attributes they will get from you and if they will have their Dad's bad habits, and you know you will love them. Sometimes life decides the journey isn't going to be a smooth one, it's going to be scenic and at times the scenic route isn't going to be very pleasant, it's going to be rough and bumpy and even a bit treacherous. You are going to feel jealous of those who go from A to B in 1 fell swoop when you seem to have hit every other check point apart from the final destination but you stay strong, because it's your childs journey and you will do what is best for them to get them to where they should be.

As many know starting school for Jacob hasn't been the easiest of times. So I thought I would do a wee quick update as I know some people care but are afraid to ask me for fear of me bursting in to tears.

The school are amazing, super supportive and the staff try their utmost when it comes to helping Jake but due to the physical layout of the school it's not the best environment for Jake as he is a climber and adventurous and he doesn't see the dangers around him so he's constantly at risk and whilst they've made as many changes to the school setting as possible, they can't pick it up and move it to somewhere all on one level away from main roads. As well as being physically unsuitable because of sensory issues that Jacob has the class - which consists of 30 children, is just too big and too busy and loud. They don't have a quiet room that Jacob can disappear off into so he has no escape from the hustle and bustle and it causes sensory overload. In the mean time the school have made him a den which is a pop up tent filled with sensory toys and lights, and he loves it, so much so we've created similar at home for him. Jake feels safe in his den and spends most of his school day, which is only 2.5 hours long in there or running around the school trying to escape. So along with feedback from other organisations who have been involved with Jacob it has been decided this school isn't for him and in the new year we will be looking for somewhere more suited to his needs so that he can be settled, and learn.

The complex needs team who have dealt with Jake from being the age of 2 at nursery have assessed him and said that in their professional opinion they believe him to have ASD and ADHD but obviously they can't give a diagnosis, but it is definitely no longer just classified as Cognitive Delay which it was when he was younger. I already knew that but due to a lack of support from nursery the Paed had always just kind of shrugged it off and said there is definitely something there we will assess when he's older.

So there you have it, our roads hit a bit of a bump and not gone quite to plan, but I've always said I wanted Jake to like school, to make friends, to learn, and to be happy and at the moment that isn't happening. On Monday me and his current school are going to make a start on applying for an EHCP plan for him, the paed has been chased up, complex needs are going to be intouch, STARS are being contacted and school is behind me every step of the way and in the new year we will start looking for a new school for him.

I was upset, not about Jake being different, I've always known he was special. Just upset that my boy wasn't getting to be happy and making friends etc. Then I spoke to my dad and he said to me:
''Dani, if Jacob was blind you wouldn't send him to a mainstream school where all the work was written on the board that he couldn't see meaning he couldn't learn and would fail. You would send him to a school that had all the right tools to deal with children with his needs and that is exactly what you are doing now. This isn't a negative, this is a positive, you are going to find the place to give your boy the best possible chance to succeed.''

So there you go. Mama's busy getting my boy a brand new tool box, full of the right tools for the job.