Monday, 9 February 2015

The route to home education

The great home education project started with a bit of a whimper. Blue was struggling at school. Almost every day I was getting a phone call asking me to come and pick her up because she had had a panic attack and needed to come home. When I got to school she was often spaced out, shivering and stuttering. She was full of guilt and shame and confusion about why it was that she could not cope. 

So to begin with she was staying at home for a few days in the hope that a bit of a rest and time to catch up on her work was enough to get her back on track. After the October half term, during which she had received her diagnosis of Asperger's, she managed two and a half days before we decided that enough was enough and she needed longer than a few days away. We arranged for work to be sent home and tried to help her keep up with what her classes were doing by following the school website. It wasn't long before that was clearly not going to work either. Her TAC team made a an appointment to see her at the end of January, during which time she was to try to get into school for clarinet lessons or other very stress free activities. However, the school work was impossible to keep up with when she was getting no input from he teachers. We arranged what we could but going into school was so stressful that the lessons were useless. Finally, the school contacted us about science. Timed practical assessments were coming up and they didn't see how she could take them. It was already clear to us that this was not a situation that could continue so, with the support of the school, we withdrew her.

This term has been a long slog for me. I have been working for four mornings a week. I leave Blue at home with some homework and come back at lunch time. I have been arranging tutors and trying to make decisions about how many gcse's and which ones she should take. If she had been able to cope with schools she would have taken ten exams which is ridiculous. I think we have cut it down to six, which feels too little but on the other hand, means she ought to find it easier to pass the ones she takes. She may push it to seven but that is up for discussion! 

For now, in the week before half term, I think we have reached a kind of equilibrium. Blue cannot work unsupervised. She simply refuses to, even if someone is in the room, unless they can see her computer screen, or paper, she doesn't work. It is frustrating but it is as it is. I am not keen to pile guilt onto her. I am not sure I understand how hard it is for her to simply exist. So I am being as calm as possible, in the hope that she will accept that I am doing my best. I also think that we could easily go down the wrong track here if I get angry all the time. If I want her to work, which I do, because I want her to realise her goals, she needs my support. So I have to swallow my concern and show her how to make the best of this situation. 

For the moment she is taking English literature, English language, maths, French, science, Jewish studies and possibly latin. We are going to study Latin and take a decision later on about the exam. She needs six a-c grades to go to the school she wants to for sixth form so that is what we are aiming for. She also is having art lessons, because she loves art and deserves encouragement there.

So that is where we are after half a term. I think, hope we have a structure and a modus operandi and a way forward. We will see!

Saturday, 7 February 2015

In the beginning

In the beginning there was a bump. It was a very wanted bump and a lot of plans were made for it. The bump was fed nourishing food. It was kept away from stressful situations and upsetting thoughts. It was written an amazing birth plan.

When the time came the bump didn't want to move. The midwife did a stretch and sweep and the bump started to feel a bit uncomfortable. After a couple of days it was still firmly stuck inside but now it was starting to get a bit upset. The birth plan was thrown half out of the window. It was a shame it didn't fall all the way out never to be seen again. After a lot of noise and pushing and a very strange couple of hours where the bumps cramped world went all "Whoo" from the pethadine the bump tried to make its way out into the world. when the bump got a bit stuck a strange sucky thing was planted on its head and it was hauled out into the world.

The world went very still and warm as the bump, which was a girl, lay on her mother's chest and gazed up into her eyes. It wasn't the best start in the world but it certainly wasn't the worst. She went home with her mummy and daddy and started life as Blue.

It didn't take long for her mum to notice her baby was different to other babies. By 2 weeks she was smiling at people. By three weeks she was sitting up on her mummy's lap and taking in the world. Other mums were concerned their babies were falling behind (Already! I know. It was Hampstead after all!) and tried to stimulate their babies who cried and fell asleep.

Blue loved routines. She slept, ate and played to routine. She was the best behaved baby ever, so long as her routine happened. It didn't matter where it happened. Place wasn't too important at that point. Action and time was. You could set a watch by her.

She was starting to show an interest in language and at 6 months was already showing signs of knowing when to turn the pages of her books and singing nursery rhymes. At 9 months she failed a hearing test and everyone ignored it because she had started to speak. Her first word was "flower". By her first birthday she had a vocab of over 70 words and short sentences were only a month behind. By now, Blue had moved to Yorkshire and was loving her big garden. She had a blissful 9 months and then catastophe struck. Her brother was born.

In an instant her world collapsed. Here was noise and unpredictable screaming and the routine got lost and her lovely, predictable world came to and end. She showed how much she hated it by refusing to touch the baby, (who was named Red) falling to the ground and banging her head on it when he screamed. Her most used sentence was "Feed it - the baby" as when he was being fed Red was quiet.

She was a funny little thing. She taught herself to read when she was three and loved nothing more than an afternoon with her books. She was not so keen on other children, who were loud and ran around and touched her.

The family moved to Suffolk at this point and a new bump began to grow. In an effort to prepare her the bump was found to be a girl and Blue was introduced to the idea of a baby sister. Unfortunately she got the wrong end of the stick (a saying that still puzzles her)  and thought that the baby would be a replacement for herself. She asked her gran to adopt her before she was sent away. Her mum was so sad that she had thought that she wasn't wanted that she asked Blue to name the baby and to stay to give her the name. This helped Blue a lot and she remembers choosing the name "Green" for her baby sister and giving her the name when she arrived.

Life had got pretty hard at this point. Blue started school two months before Green was born and it was not an easy move. Her parents had chosen an independent school with small classes and a caring ethos. Sadly, it wasn't enough. The school didn't tell her parents how she cried every day, couldn't follow instruction or do simple tasks. They didn't tell them that she struggled to make friends or know how to play. Every day was hard and it got harder and harder until, when she was eight, Blue pulled out all of her hair. It took her the whole Easter holiday but when she went back to school there was nothing left except a fringe around the back.

Her parents asked for help and advice but the GP just shrugged and the school sent her to an Ed Psych who said she was gifted in language and below average in other things, like organisation and maths and logic. She had an IEP which most teachers ignored and so she carried on, being confused at school.

At eleven she moved to senior school with all her friends. For two years it was fun. She liked her little group and they looked after her. Then, when she was thirteen it all started to get too much. She couldn't keep up with the work. She couldn't cope with hygiene. She had no idea what was going on in her social group but everyone had changed. Her friends continued to look after her but the wider school became more and more threatening to her. Finally, when she was fourteen it all fell apart. She started to have panic attacks. To begin with just one a week but within six weeks she was having several a day. It was so hard for her. The more she tried not to panic the worse it got. She only wanted to go to school because of her friends. There was nothing else that was not stressful or frightening or unpredictable or pointless. She felt like a total failure and told her mum everyone would be better off without her.

Blue's mum felt like her whole world was crumbling when Blue said this. She saw that however much support and love she gave to Blue, it was no good if she didn't listen to her daughter and really think about what she was saying. In desperation they saw a psychiatrist who they hoped would be able to help with the panic. He spent some time with Blue and looked at her Ed Psych report and the developmental report her mum had written and an email her lovely house mistress had sent him. Finally he said, "Blue has Asperger Syndrome."

The words set her free.

Not immediately. To begin with it was very hard for Blue and she had to mourn the loss of who and what she had thought she was. She and her mum read some books and her CBT therapist changed her approach to help her understand what it was. Finally, Blue started to feel that she wasn't bad, or broken or useless or pointless but DIFFERENT.

Now she is home educated. She has a fantastic social life, on her terms. She is writing a novel and studying for her GCSE's. She feels happy and hopeful about life. Sometimes things get her down and she gets confused and angry and flaps her hands. Sometimes she get excited and pleased and does a "happy-flappy". She struggles with simple things and flies with hard things. She is a normal fourteen year old girl with all the strops and loveliness that comes with it. She has to work hard to read people's faces. She is never sure if someone is joking. She hates noise and crowds and finds them intimidating but she is finding ways to cope.

This blog is all about her, and her brother Red and her sister Green and her mum and dad who all love her very much. It is written by her mum.