Updates April 2019 and my Autism Awareness Month poem

So now that the background stories are completed I aim to do monthly updates...more if I have time :-)

Lewis is still at home. It is 5.5 months now since he left his last school. The local authority encouraged me to remove him, so you would think they'd want him resettled as quickly as possible. Unfortunately this isn't how SENAR works. His ECHP has been amended...all the lies have been removed (that said he was more severely ASD than he actually is to justify the huge fees they charged) but that was over a month ago. I did have a phone call from the agency about a tutor, but i'm not terribly keen on this idea, he needs (and wants) to be in school.

Holly is back to school refusing. I was so hopeful that this new special school was the answer but in reality they have been no better than her previous mainstreams. They are shouting at her, telling her there is nothing wrong with her..threatening to fetch staff to drag her into classrooms, lying to get her on the school bus, promising to drop her home first, whereas they dropped her last as per the route! Lying to get her into the playground, telling her she can't stay in the classroom as they have meetings …...and I could go on. I'm not sure how we can go back from here. The CATeam are involved and I've been advised to ask for a meeting. I'm pretty confident they're not following her plan.

Lydia seems to be happy enough at the moment. Little things keep cropping up at school but for now I will let her plod along whilst I sort out her siblings. She has an echp heading for tribunal..probably around August time.


Finally...here is a poem I wrote about my daughter in aid of Autism Awareness Month..enjoy!

Lydia

Lydia, my 5th diagnosed kiddo, was born by C-section on her due date. She was flipping her position daily and they didn't want to risk me going into labour with her breech.

2 days after her birth I became very ill and I was rushed back into hospital. I had a serious infection and they started to pump me full of antibiotics via 2 cannulas. Lydia was being cared for at home as I was too sick..she eventually joined me after about 3 weeks.

At 2, Lydia was diagnosed with global developmental delay. She was so laid back and happy but I did worry about how late she walked and talked. Nursery was great, she progressed a lot and I even asked to be discharged as I felt she had caught up.

It was at school where her real problems started, where I noticed she was way behind her peers in regards to her reading and writing. She also found it hard to make friends, preferring to play alone. In Year 2 it became clearly evident that something was going on. The school invited the 'Pupil School Support' service in and they observed her in class and the report that followed, although upsetting, was spot on. I visited my GP and he referred her to the Child Development Centre and after 2 appointments Lydia was diagnosed with Autism and later on with ADHD too.

This answered a lot of our questions...how black and white she was...how she didn't 'get' sarcasm and how she craved a rigid timetable. But it didn't explain why she was so academically behind. Half way through year 2 she started to school refuse..some mornings it took 2 members of staff to get her through the door. When I asked her why, it was always the same reason..the work was too hard!

I decided to pay to have her assessed for Dyslexia. I had read a lot about and she did seem to fit criteria! It took 3 hours (with lots of breaks) to do all the many activities with the Education Phycologist but the conclusion was...yes, Lydia had Dyslexia...as well as Dyscalculia.

The Summer holidays came and went and it was time for her to start the Junior School. This is the same school that had failed my older daughter Holly, so as you might imagine I had great reservations. Week 1 and despite being told they didn't foresee any problems...she school refused and tried to escape the site every morning! Her anxiety was through the roof bless her! Too much change and too many demands.

After a month of this, the school invited me in to discuss her progress. The Senco handed me a risk assessment..I sat and read it and to be fair I was quite sad that they'd needed to put so much in place to keep my daughter safe including new fencing around the playground! One bit made me smile...they had put speed bumps under the delivery gates to prevent her from wriggling through the gap. Not sure why I would find that amusing as it really isn't funny, but I did! Then he dropped the bombshell. He didn't believe Lydia had dyslexia and in any case, her private diagnosis would not be recognised in Birmingham!! He told me... if he felt it appropriate, she would be put forward for 'Pathways Dyslexia' a year of assessments.

Not accepting that, I did a parental referral for an ECHP (Education, Care and Health plan) the document that unlocks funding for the child (I want her to have a 1 to 1 teacher). The local authority agreed to assess Lydia and they sent out an Education Phycologist to visit her in school.
The report from this visit backed me up in saying that Lydia is 2 years behind plus she witnessed significant struggles socially and educationally, but this Senco has told the local authority that she is progressing and doing well (she isn't) so they refused to issue the funding. I am now having to appeal this decision at a tribunal...this should be in about 5 months time.

Meanwhile, Lydia is 8.5 and she can only read about 30 words and some of those she will know one day, but will have forgotten the next. She can't grasp any of her times tables and she spells phonetically and you can rarely read what she writes. When the class do reading work, they give Lydia something different to do...she can't even do lessons from the board. She is missing out on so much. But watch this space...I will never stop fighting for her!

Holly...

Holly.....

Holly has always been a child who knew her mind. As a toddler we used to say she was going to be the next Prime Minister! She insisted on a certain top for her bottle/beaker...refused to have her hair brushed..screamed if took her to a party..and once an activity had finished, like swimming or a movie she would cry unconsolably!

At 8 she started screaming in short bursts rhythmically..it was the weirdest thing. She didn't do it at school and there was no obvious reason as to why, so we were clueless.

Holly started the local Junior school after doing quite poorly in her SATS, but she seemed to catch up quite quickly. Her teacher was awesome and Holly loved him. In Year 4, things started to go down hill...the school was taken over by an Academy and during that process a lot of the teachers left. I started to get reports that Holly was loosing her temper, throwing chairs and being rough with the other kids. At home, the screaming started again and she was taking her frustrations out on her younger Sister.

I asked the school if they could refer her to the Doctor, only to be told there was nothing wrong with Holly other than my parenting...nice! I persevered and they did contact my GP who then referred her to the Paediatrician. He saw her regularly, every 3-4 months, and after 2 years he told me he could see traits of Autism. He sent some questionnaires to the school but the Senco refused to fill them in. Eventually, after a strongly worded letter they were completed, but the Senco made her out to the perfect student and on the strength of this the Paed refused to give her a formal diagnosis.

This surprised me as I had teachers, dinner ladies, mentors coming to me saying how concerned they were about Holly..but STILL the Senco refused to acknowledge there was anything wrong. Holly's behaviours at home were at this point off the scale and beginning to spill over into school. She was found curled up behind a bush in the playground during P.E..her Maths teacher reported that she was rocking in her chair, spaced out, not aware of her surroundings and she was school refusing on a daily basis needing a couple of teachers to get her in. I asked the Senco for a designated room where she could chill if needed but he refused saying she didn't it! The Deputy Head contacted the Paediatrician to say things were at crisis point.

The one morning, whilst I was 'dragging' her to school, she loosened my grip and ran...so fast I couldn't catch up!! I headed for the school thinking she would be there waiting for me, but no! I panicked and asked the teachers for help only to be told that 'she hadn't crossed the threshold so she wasn't their problem' ...I ended up searching the streets on my own! I finally found her 2 roads away and she pleaded with me not to take her back. It was that afternoon that I decided to pull her out. Holly then went through some sort of break down.

I contacted the alternative education department and started to homeschool. I had an official visit to check what and how I was teaching and we were given the ok to continue. I took her out on educational trips and we did lots of projects, all recorded in photographs. It was during this time that the Paediatrician gave Holly an official diagnosis of Autism, challenging behaviours and Sensory Disorder.

Holly's Secondary place arrived in the post and after a discussion, we decided to give it a try.We did all the induction sessions and I made sure all the Special Educational Needs staff knew everything about Holly...but sadly it was the worst choice I could have made. The SEN staff did their best but the mainstream teachers didn't take the time to get to know her..they just threw demands and no reasonable adjustments were made. Not only that, but some of them seemed to go out of their way to upset her...the music teacher made Holly sit in a room full of pupils playing instruments, despite the fact she was showing her 'get out' card!. The PE teacher made Holly sit in the middle of running track whilst the class circled her calling her names, because she was too anxious to change her clothes. Holly would sit sobbing in class because no one would help her and during assembly when it was too crowded and loud for her. Towards the end, because she was too scared to go into the classrooms, she would wander the corridors. Ultimately, not knowing what to do, they put her in isolation... a concrete room with no windows!!

After 10 weeks of this I was advised to stop sending her by her GP and CAT (Communication and Autism Team). Holly went into a deep depression. She stopped eating, washing, going out...she would sit rocking in silence for long periods, or insist I stroked her head whilst she sat by my feet. It took 6 months to show any signs of a recovery...she had had another, more serious mental breakdown.

After a year, her school organised a managed move to a lovely little Independent school nearby. It was a music school with small numbers in a quaint house... it seemed perfect. Holly did a couple of taster days and fell in love with it...she liked the relaxed atmosphere and the caring staff...but then came the bombshell! The Head couldn't give her a place as her needs were too great. Holly was devastated, she cried for a whole hour in their grounds and I couldn't get her to leave. She was very down for weeks after this.

It was then decided to try a tutor. I thought it was a good idea and we met the man chosen at the local library! The first session went well, i stayed with her and they got on well. After that it was sporadic, he missed several sessions with no prior warning and Holly just couldn't cope. Her confidence was at an all time low! She thought that nobody wanted her...no school or tutor wanted to teach her and that perhaps the world would be better without her!

During all this, I had been trying to get her ECHP (education, care and health plan). Her first Senco prevented a previous attempt, so I tried again. Luckily her Secondary School supported it and in 2018 (and it wasn't easy, lots of meetings, emails and phone calls) she was awarded her plan. This unlocked a package of money, which I needed for a special school.

I visited lots of schools and I narrowed it down to 2. The local authority chose the cheapest and Holly started in February 19. I would like to say that this was her happy ever after school, and you would expect more awareness and knowledge from a specialist provision, but alas no. Holly was granted transport but on a bus of children with severe autism. She is very sensory and sitting her by a pupil who makes repetitive loud noises whilst banging his chair (which I totally understand, it is his way of coping) was never going to work! After an hour of this, Holly was arriving home in tears and it took the best part of the evening to calm her down.

When Holly participated in an activity in the hall the Senco asked her how she was able to cope in the hall and yet not with the bus and told her there was nothing wrong with her!!. They are totally different situations!! To get her onto the bus one afternoon, they promised they would drop her first...they lied, they dropped her last as usual!! At parents evening they told me they were having to be really firm with her and openly told me they lied to her, saying they had meetings, to get her into the playground. The Senco told me she was defiant and only wanted to do the subjects she likes. They are doing the complete opposite to what is says in her plan (which is law abiding)!

The meltdowns are back, she has trashed her room in anger... thrown a heavy object down the stairs...got a knife from the kitchen and threatened to stab herself....and run out of the door! Goodness knows what this is doing to her mental health! The Communication and Autism Team have been into school and since then, things have improved slightly and Holly is calming down....but watch this space!

Here are some pictures of Holly before (top)and during her bad times (bottom)....

Lewis....

I feel I should give a back story for my 3 youngest, so here goes....

Lewis

Lewis is 14 and he was diagnosed with ASD (autistic spectrum disorder) at 7.

He started his educational journey at the local primary but it soon became clear that he was struggling and I made the hard decision to pull him out and homeschool. This worked well for 4 years until I started to worry that he was missing out socially.. so i worked with the local authority to get his 'statement'. This is a legal document, all about the child and their struggles, which unlocks a package of funding. In our case we needed this for a special school. A school was chosen and he was excited to start.

 Unfortunately they got even the very basics wrong. Springing surprise trips on the students...no warning of a planned fire drill...little or no planning or preparation for lessons. This caused some of the students to meltdown and they would then use restraining as a method of control leaving Lewis with bruises. I pulled him out.

I then fought for a place at an expensive independent special school. It took a lot to convince the local authority but eventually they agreed to fund it. Lewis was very happy there for 2 years, but for reasons i'd rather not say here (nothing to do with Lewis...it was the school) I was left with no choice but to remove him.

So for the last 5 months he has been at home again. He misses his school and badly wants to start another, which is amazing after what he has endured. His 'statement' (now called an ECHP, education care and health plan) has been updated so we just need to find him one!

Watch this space!!

Long time no post..a major update!

I have decided to start adding to my blog again. From now it will be more about the special needs of my children and my personal experiences with schools and the local authority.

So, I think I have to do some major updates!!

My eldest 3 are now 33, 31 and 30. My eldest boys are both working, have their own homes and doing well. My daughter and her 3 children are living back in the family home until she finds another house after her landlord sold up!

Stefan is 26 and diagnosed with ADHD and ASD. He still lives at home but works as a steward at BCFC.

Charlotte is 22 and diagnosed with ASD and Anxiety disorder. She lives independently and does art commissions.

Lewis is 14 and diagnosed with ASD. He is in between schools at the moment, his special interest is gaming and Dr Who.

Holly is 13 and diagnosed with ASD, Anxiety and Sensory disorder. She attends a special school. Holly has had an horrendous time educationally. Failed by every school so far, through the lack of awareness and knowledge.

Lydia is 8 and diagnosed with ASD, ADHD, Dyslexia and Dyscalculia. She struggles at school with her reading, writing and social interaction.

I have 3 Grandkids..one of whom, my Grandson 5, is severely ASD, non verbal.

So that's the crew!

Soooooo long since i posted!

So i stopped writing on my blog...life became very hectic, still is really, but now that i homeschool i thought this would be the perfect place to write about our projects.

The biggest change since my last post must be the title, yup i now have 8 children :-) A little girl named Lydia who was born 1st November 2010..she is nearly 19 moths now and the love of our lives! I caught a nasty infection in theater during her c-section and this put me practically out of action for 6 months (8 months to feel fully recovered) but i am grateful to be here. I had gangrene of the womb and the nurses told me after it was touch and go there for a while. I was in hospital for a month..not the best start for my little munchkin :-(

 I have been homeschooling Lewis for a year now, he is mildly ASD and basically his school couldn't cope with his eccentricities leaving him in the classroom for assemblies and playtime and letting him sit out lessons under the table, so i pulled him out. He is coming on very well despite having learning difficulties. However I don't find this a problem, i just teach in a more visual, hands on method which seems to be working :-)

Quick catch up on the others...

David, has now been working for National Express for 4 years gaining 2 promotions within that time. He is now also part of the team who produces the website having quite a big say on how it looks.

 Michael, has a part-time job at a local chemist..looking for more hours all the time. He has a girlfriend who now also lives with us.

 Jessica now has a little girl who will be 2 in August. She works at a retail store part-time whilst her daughter goes to a private nursery.

 Stefan works at the local newsagents but is also job searching. Loves his games and has a wide circle of friends in the online gaming world.

Charlotte is in the middle of her exams, a very bright girl held back by anxieties about almost everything. Her teachers have little doubt she will do well and is on course for University.

Lewis is the little one i am homeschooling, so you will be hearing lots about him :-)

 Holly is still an independant little miss lol Knows her own mind but at the same time is caring and has a great insight into how people are feeling or how they will feel if something happens...a good quality to have. She struggles with lessons hampered by her poor sight. She may need some catch up lessons in year 2.

Lydia, my cute, happy, easy baby :-) She occupies herself throughout the day, has a decent nap and STILL sleeps through at night...oh and she LOVES books, you will rarely find her without one in tow!

And thats it really.. Andy still works away making life difficult sometimes but i also like that time to do things MY way lol So... watch this space....

http://portablenorthpole.tv/watch/5bb64dd42309e27d39c0fc3cd1127627