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!