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)....
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