This is how September Should Be

It's been a while since I've blogged.

I was in a fog and family life, my mental health and the real world kept me away. I would type a post then bin it, positive that nobody would want to read my drivel anyway.

Then yesterday on my memories on Facebook an old post popped up; This Isn't How September Is Supposed To Be and I remembered that as lovely as it is to have people read a blog post, it's ultimately more therapeutic for me and I was inspired to write again.

So we are now a year on from that blog post. A year on from daily tears, daily battles to get into school, and daily battles to stay in school for more than 2 hours and I can quite honestly say in the terms of school it's been a bloody fantastic year.

J has been in his school for one year now. Full time.

The school don't have your typical year groups of Reception, 1, 2, 3 etc although they are loosely based around those ages they also focus on abilities so there are some children in J's class that are a year older and some that are younger.

J initially started in a lower class as they had no educational assessments to base his levels on as he wasn't accessing learning in mainstream.

Part way through the year he changed classes to the next one up. The original teacher couldn't keep up with his thirst to learn.

From a child who hated school my boy had suddenly become one who loved to learn.

He settled into his new class brilliantly, forming some fantastic friendships and developing a fondness for his teacher Amanda - whose name we had many a jestful argument about as J would always pronounce it with an H. On school reports and parents evening she would rave about what a kind, caring young man he is. How settled and focused on learning he is despite his issues.

When I talk to the staff at J's new school about how he was in mainstream  they are always shocked, because it's something they have never witnessed themselves. J in a SILC is completely polar opposite to the J that was in mainstream and that's a great thing not only because my boy is doing so well but because I had to battle my own thoughts regarding sending him to a SILC as for a while I felt like I was writing him off and that hasn't been the case. We've allowed him to flourish. He is in the best possible setting he could be.

Academically in terms of reading, writing etc he's still majorly behind the level his peers are at but he is making such fantastic progress that I'm not worried anymore, I used to think those things would never happen but now I know they will. He has developed my addiction for notebooks and pens and always has one to hand to draw in, or do math, or try to write words.

His drawings are brilliant, he used to struggle with even a simplistic stick man but now they have so much detail and he spends time colouring in too, focussing on not going over the lines. For a child who can never sit still to find something he is so passionate about that his brain bypasses the urge to move and fidget is wonderful. (It's also good for comping as he now loves entering the more creative comps and has even had some fab wins from them!)

I had a wonderful summer holiday with him that I genuinely dreaded him going back to school in the fear that we would have undone all the good progress of the past year but I needn't have worried. The days are long for him due to a change to school transport (thanks Leeds City Council!!!) so he leaves the house at 7:20am and gets home around 4:40pm but so far so good.

He's always eager to go to school and he's always eager to tell me about his day.

He came home with some very exciting news yesterday. He has been put forward for Class Rep on the School Council! How cool is that?

So yes, this is how September should be.

Danielle

The Difference a Week Makes.

What a difference a week makes.

Last time I posted I was upset, I was angry and I was frustrated. I was struggling to get answers as to when J would start his new school, I was being promised phone calls and emails and I was hitting a brick wall. I got so much support from so many people. I needed that. It genuinely helped.

Things were still stagnant and getting no further. Even J's Speech and Language Therapist got involved in trying to get answers and usually medical professionals don't get involved with school admissions. He got me a number for the admissions officer who was dealing with J and told me what days she worked. I rang her up and was promised a phone call back. Guess what? It never happened. The Old School had tried chasing, I'd tried chasing, now medical professionals were trying to chase too and still no answers? It wasn't good enough. It would be really easy to get annoyed with the new school but they had no proper knowledge of J or our situation and that's why they couldn't provide answers. Apparently our case worker who dealt with the EHCP and assigning us a school doesn't have the best track history. The SENCO and a learning mentor  from school had had enough and went to the new school. This was on the Wednesday. They wanted to get things sorted and were willing to wait as long as it took. They meant business. They came back with answers.

On Friday we said goodbye to the old school for the second time.

Monday came and I dressed J in the uniform for the new school and my grandad picked us up. As we didn't know how long the journey would take we set off in ample time and were too early. A lot of waiting around didn't help with J's anxiety and he was a little disruptive and I filled with dread. Mrs W his one to one from the Old School came to help with the transition and I left J there for an hour. He had a great time. The next day my grandad again drove us to the new school. I was told this time do collect him up at 11am this time. Again they reported another great day. Wednesday he had lunch there and I collected him at 12:45 and then on Thursday he went full time!

After over a year at being in mainstream and only doing 2 and a bit hours a day he had managed to transition to a SILC and full time in just 4 days! Not only that but now he was full time he was going via transport so was picked up from home at 8am and dropped back home at 4:30pm - a long day for a 5 year old but he took it all in his stride.

So now he's in full time school. His class has 4 or 5 staff members to around 7 or 8 children. They have their own dedicated sensory room and their own rebound room with a swing and trampoline and other physical equipment as well as a private outdoor space. School say he is doing brilliantly for someone who has had no real access to learning as he was never in a classroom they've really surprised him by how well he's doing.

The difference in him in a week at home has been amazing too. I've never made it a secret that he can't read or write, or that we struggle with phonetics or even getting him to commit. Yet on Thursday he went and got a pear and came back in the living room.
''Mama, what letters are in pear? P. E. R - PEAR''
Now I know he missed a letter out and it would be so easy to correct him but I was just so pleased that he had sounded out the word as it's something he'd never done before. He can now spell out his name and the word CAT from memory. He's constantly asking me what letters are in words and is really interested.

He's also shown an interest in the time - digital not analogue and asks to check the time on my phone to tell me what time it is. This again is a massive thing as he's reading the numbers left to right whereas he would read them backwards before.

These may sound like small things but in the grand scale of things it's amazing .

This isn't how September is supposed to be...

J got his EHCP.

It was granted a little bit late - during the summer holidays - but it was granted and finalised and in place.

It named the new school we wanted.

This was everything! A fresh start, new beginnings, my son getting the education he not only wants and needs but deserves. Or so I thought.

August zoomed past us at a rate of knots and I'd heard nothing from the new school. I tried ringing but because it was the summer holidays there was no answer. September approached and I bought J's uniform based only on what I had read on the schools website as nobody had told me what he needed. Then I bought a version for the old school too, and I'm glad I did.

The 3rd September arrived and I dressed J in his new uniform for the old school and I took him back there. It was 8:55am and the play ground was manic. He used to start at 9:15 to avoid the crowds and the noise and the dangers. Groups of people with a child who is a flight risk are not good! School admitted they hadn't expected to see us, but where else was I supposed to take him? Why does no school want to take my son? They had one of his old one-to-ones on hand just in case who I'd happened to bump into in Asda a few weeks before and explained what was happening. I had major anxiety. In my head there were a few possible scenarios:

• I take J and they say no sorry, he's not our responsibility any more take him home
• I take J and they ring me within an hour to say he'd kicked off and could I collect him
• I take J and he has a brilliant time and then I wonder why on earth we are changing schools.

As it goes he had his first melt down by 9:03am, I cried, in fact I sobbed. Someone asked how I was and I broke. I asked at the office what time should I collect him and they didn't know because he shouldn't be there. I arranged to pick him up at 11:30 the time I picked him up last year. 

11:30 came and I arrived at the school and the Head was waiting for me. Uh-Oh! He said that due to the year below having a phased start there were a few safety issues so could we alter J's hours whilst we chase the new school. So now J has gone from a 9:15 - 11:30 day to a 9:15 - 11:15 day. 2 hours a day education. Well I say education except he's not really learning. He's in a class of his peers who are all ahead of him. He just wants to do his thing, he just wants to play, he doesn't want to join in with lessons because he can't read, write or do math and it frustrates him. 

So now we are in the second week of the school year, and this morning I got a phone call from the Old School. The new school is ignoring them. They aren't answering calls or replying to emails. I'm having the same issue. This is not on. They are the named school on my sons EHCP. The magical document that is supposed to make everything easier! ha! So J has gone back to the Old School to do a 2 hour day in a place that doesn't really want him and can't really meet his needs. 

I've fired off an email this morning, which my friend says is too polite, but yet still to the point asking for answers. I've tried to not lose my temper as I worry about repercussions on J but I'm frustrated. I'm frustrated that once again things for my boy who deserves the world and more are not straight-forward and once again I'm having to fight! 

I hope I get a reply. 

I hope I get a start date. 

I hope the new school eventually live up to the expectations and promise. 

I am quite laid back and chilled usually but I will turn into protective Mama Bear for my boy, and I will fight to the ends of the Earth for him. 

I give it a week. I feel that is ample time. Also it means J does a full week at the Old School as I don't want him to be confused doing a few days at Old School then moving the the new one, I want him to start a fresh on the Monday so he can have the weekend to prepare. If no news in that time and still a lack of response to calls or emails my next port of call will be to arrange someone to take me to the new school and I shall sit in the reception area and refuse to move until they sort it out. 

For the second year running September has gone to the dogs. What is supposed to be a happy and exciting time about going to school is stressful and frustrating and my son is once again pushed from pillar to post and his needs forgotten about.  

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. 

You gotta have faith...

In the words of Limp Bizkit - You Gotta Have Faith.  
(Or George Michael depending on your music tastes) 

I've been a little quiet the last few weeks. because J starting school didn't go quite to plan. 

I'm currently feeling like a rubbish mum and that I'm letting my son down and just want to talk to somebody who maybe understands.

My son is almost 5. He has suspected ADHD with some autistic traits. He started school on the 4th September. His first week was 8:55-11:45 and apart from struggling to follow instructions, running off, leaving the classroom etc it wasn't too bad. The second week on the Monday I dropped him off took him into the classroom and said hello to the teacher and TAs and he went off to play. I went to hang up his coat on his peg and I left for home. In the meantime he has decided he wants to go home and so whilst it was busy with so many people in the foyer and entrances has managed to slip out unseen and leave school grounds. Luckily I left when I did as I saw him and he has no road safety awareness at all. I managed to coax him towards me by saying I needed his help tying my lace and putting my umbrella up. (I am also disabled so running at him wouldn't have helped either of us) and I took him back into school. At which point I was crying and shaking. They got some staff to take him into class as he had to be peeled off me and they took me in the office to calm me down and talk and it was decided that as he gets spooked by the large groups his start time would be moved to 9:15 and he'd finish at 1 this week (should have been 1:15) and then the following week when he should be full time he would finish at 3. 

Every morning was a battle getting him in. He would drop to the floor and lash out so I would have to carry him and they'd have to peel him off me. They've started using a LEGO super hero sticker book to help get him in on a morning as he's a huge LEGO fan and I thought things were getting better.
Thursday I pick him up and they say can we have a meeting when you drop him off in the morning as he is struggling and we need to talk about what happens next. 

Friday morning I go into a meeting with the head, the teacher and the senco. They tell me the communication they received from nursery didn't prepare them for how J is and almost played down what he was like. They aren't used to someone quite so young and quite so adept at opening/unlocking/problem solving as J (the head reckons he's got a real future in engineering!) he doesn't join in with group activities, won't play with other children (although they are trying to work on this) keeps trying to run off/leave at lunch times he's struggling to sit in the canteen with everyone and wants to be off and about and is needing staff with him the whole time to ensure he is sat eating. There is other stuff they said but at the moment my heads like a tv with static sorry. So their suggestion is that for the next few weeks he won't be going full time he will be doing 9:15-11:45. They hope that getting everyone else settled in a routine may help him, and will also make it easier to focus on him. They are going to have the locks moved higher in the hope it stops him escaping (after drop off he can only get out of the building not out of the grounds as it's locked by a magnetic lock) and also get the complex needs team to come and assess him. They had lots of positives to say about him - he's very funny, bright, clever, brilliant at building and working things out etc.

I just feel a bit like I'm failing him and like I should be doing more to help him. It's hard seeing everyone else with their 'perfect children' who can read and write their name and are little angels and feel like J is going to be labelled as the naughty one and that it is in some way my parenting to blame.

So I guess in the mean time I just gotta have faith - in my boy, in the school and in myself.