My eldest son will be getting his GCSE results next week. Not a fantastic achievement in many people’s eyes maybe, after all everyone does it. But then not everyone is Andrew.
When I was pregnant medical reasons made it difficult to determine a due date for Andrew being born so it was estimated by an ultrasound scan at 16 weeks. Going by that prediction he was born 4 weeks early. At birth he was absolutely fine and was a good weigh of 6lb 6oz. He was put in special care as his blood sugar was low and he had some jaundice but was only in overnight and had no apparent problems after that.
He was a good happy baby but something wasn’t quite right. He was ‘too’ good and having had much younger brothers and sisters and been around a lot of other babies I knew I was lucky but at the same time felt something wasn’t right. At the time, people wouldn’t listen. I tried my GP and health visitor but was fobbed off with things like ‘oh, it’s because he was early’ or ‘boys are always slower/lazy’ and ‘don’t worry, he’ll catch up’. Even at six months old he would happily lay on the floor staring up at a bookcase, kicking his legs, smiling and chattering to himself. He reacted to us if we played with him and would look at toys if in his sight but other than when he was hungry I think I could of left him there all day and he wouldn’t of objected at all. Yet still no one listened to my concerns.
Everything changed when he went for his 8 month check and all of a sudden I was getting accusing stares and questioned on why I hadn’t noticed x, y or z. Then to top it off Andrew went from being a total milk addict to refusing to drink it at all and started to lose weight. At the time we didn’t have internet and all I knew was the way things were generally done. I had no one to show me another view or point out that his weight wasn’t everything and so every time we went to the baby clinic I’d get pressured to feed him more and fatten him up. I wish I had known I didn’t have to go at all because the staffs’ attitudes stressed me out way more than Andrew. I knew I wasn’t starving him and that I was trying and he didn’t want milk. It made me feel sad that babies weren’t allowed a personality or choices. When I look back it was now that my faith in medicine and the medical profession started to fade. There had to be something better than this out there. All the time they went on and on about his weight and got me feeding him all sorts including porridge made with cream every morning. I was counting calories and writing a food diary for a nine month old baby! At this point Andrew could not sit up unless completely supported and showed no interest in learning to walk. I could sit or lay him on the floor with a few toys and he would be fine and happy.
The only upside was that now an official check had found problems, people took notice. So, then came almost a year of appointments, doctors, hospitals, scans and tests to try and figure out what was going on. Finally a neurologist at GT Ormond Street hospital figured it out. Andrew was born with two rare and apparently unconnected conditions, polymicrogyria and septo-optic dysplasia and at the time we were told there was no known case of someone having the two together though septo-optic dysplasia is sometimes seen with other neuronal migration disorders like polymicrogyria. We were told that the outlook was not very good and Andrew would be very unlikely to learn to walk, talk, go to school or take care of himself. I was 18 and received no information more than this and no help or support. Everything I know I had to find out myself, which back then was hard going. I studied biological psychology last year which explained a lot for me too.
The polymicrogyria affects how the brain forms in a foetus and causes the gyri (folds) in the cerebral cortex to form differently causing disorganisation of the brain. It can also cause partial paralysis of muscles on one or both sides. This can affect all the muscles making speech, eating and swallowing difficult, or just some. It can also cause seizures. Septo-optic dysplasia causes the optic nerve to be underdeveloped or in severe cases, totally absent. The corpus Callosum (the structure that separates the brain halves), the septum Pellucidum (a fluid filled sac in the centre of the brain) and the pituitary gland can also be affected to varying degrees. Andrew’s septum pellucidum is absent. The degree to which a child’s vision is affected is based on where on the optic nerve the malformation has occurred. He has good vision in his right eye but almost none in his left as his left optic nerve has only a tenth of the fibres that it should. Neither condition can be fixed or even really helped; it’s more just a case of managing the affects. My stubbornness kicked in 100%, just because doctors were saying these things; didn’t mean we couldn’t try. No way was I giving up and seems that Andrew was with me on that too.
It felt like we had endless appointments and there were doctors, neurologists, opticians, ophthalmologists, endocrinologists, dieticians, special diets, physiotherapists, exercises, measure this, check that… At the time it felt like not a week went by without something but it did eventually start to slow down and I had to do his physio twice a day (which I incorporated into getting dressed as he hated it!) and then seeing a paediatrician once a month. Might be the odd other check-up thrown in but at least it was easier and we didn’t need to keep trekking up to Great Ormond Street.
I remember the neurologist we saw there, right big headed git he was. When I asked him where I could get more information he said ‘you can’t, I am one of the leading doctors in this field’ You’ve got to remember at the time I looked about 14 and was well aware what people were thinking of me and why these things were wrong with Andrew. So when he gave his gloomy predictions for Andrew’s life, I told him ‘you’re wrong, just wait and see’ I think that’s the point my ‘screw you, don’t tell me what to do, I’m doing this and you’ll see’ attitude really kicked it!
At first it didn’t look good but very slowly Andrew started catching up. As much as possible I treated him as if nothing was wrong, we went to toddler groups, parks, the library, swimming etc. He didn’t sit up until he was 17 months old and didn’t walk till he was almost 2 but he DID it! One day he couldn’t do it and then the next he just walked across the room! We went to see his paediatrician after he’d been walking a few weeks so I decided to give him a surprise and sent Andrew (walking) into the room first. When I went in the doctor was standing there with his mouth wide open, pointing and said ‘my god… when did he start doing… that?’ Brilliant moment!
For a long time there were no real problems. The weight thing was an issue for a long time but all tests were negative. He ate and ate but never put on anything, but then he never stayed still either and anyone who’s seen me and his dad wouldn’t be surprised, Andrew was bound to be tall and skinny. He was on this ridiculously high calorie diet for a while; I was making his porridge with cream! But it made no difference so eventually it was just accepted by the professionals that this is just the way he is.
Our next challenge was school. None of his doctors thought it was a good idea or worth it. They wanted to send him to a school for disabled children, but it wasn’t really a school as such. He would have some lessons but nothing major and he wouldn’t be pushed, which was good because then he wouldn’t get disappointed and feel bad when he failed. God, thanks for the vote of confidence there, what do you mean WHEN? Whatever happened to IF? Are you not even allowed to try anymore? Since he started catching up developmentally it was pretty obvious there was nothing wrong with his intelligence at all. If anything he was ahead. Andrew knew the alphabet, colours, numbers, and was starting to read before he even started nursery. I told the doctors that with or without their approval I would be applying for a place in a mainstream school. He started and was fine for nursery and reception and he enjoyed being at school too. In year 1 problems started and he was often in trouble or struggling, not with the work but with the school environment. He came close to being expelled at 5 and I used to dread dropping him off and picking him up, though he never objected to going. Again, after lots of pressure from me I was told he had ADHD. This was the first time I started to look into Home Education but Andrew wanted to go to school. We were moving in the summer holidays and he would be changing schools anyway so I let him go back. His new school totally turned things around for Andrew, he still had problems of course but the teachers worked with him, not against him and they were always willing to listen to me, saying no-one knows him better than me. He was on the Gifted and Talented children programme there, joined the school band (hated it) and school council and continuing to prove medical science wrong every day. At 7 he was assessed as having a reading age of eleven. Andrew has very little fine use of his left hand and walks with a limp as the muscles in his left leg are too short. Physiotherapy helps a little but it is a neurological problem so the muscles will always grow incorrectly. He may have an operation when he is older to lengthen it but even after that will need to have physiotherapy to keep it that way.
For high school he started at one of the best in Lincolnshire and at first everything was fine. By year 8 he was having a lot of problems and not only were the school not helping but they seemed to be actively making the situation worse. By year 9 he didn’t want to go back but I didn’t feel I was in a position to Home Educate at the time. We found an academy in the next town that many parents spoke highly of, especially those who had children with special needs. I remember his first day there well, it was when we had that really bad snow and we walked the few miles there as there were no buses running. We walked in the road along the tracks left by cars so we could stay out of the snow till I received a text when we were about half way saying the school was shutting! But after that Andrew made the journey on two buses on his own and got on so much better. They really helped him and straight away put in place the things I had been fighting. Unfortunately Andrew only went there for a year as we moved back to Surrey, his school here were ok, not great but not bad either. Earlier this year he was diagnosed with Aspergers syndrome. I had suspected for a while as I have it myself but wanted him to make the choice about going through the assessment. Since then I have read that many children with Septo-optic dysplasia are later diagnosed with autism or Aspergers syndrome or show a lot of traits found in the autism spectrum. I also know now that low blood sugar at birth was because of it as well.
In September he will be taking A-levels in psychology, sociology, English and I.C.T and in the future is interested in working in child psychology or maybe as an educational psychologist.
I believe his story shows that there is always hope no matter how slim the chance and not to be held back by other people’s beliefs and attitudes or even medical labels. I have a younger son who also has special needs. He has autism, PDA (Pathalogical Demand Avoidance) and has seizures which may be epilepsy but may also be caused by a condition similar to Andrew’s. I will be Home Educating him as he simply does not fit in to the school system’s way of thinking. I can’t fault the school he went to, they were great and very tolerant but the system labels him as falling behind and having difficulty learning and that is not the child I see at home. We are only three weeks into our Home Ed journey but already he is happier, bright and calmer. My inquisitive, knowledge sponge, boy is back and my worries about Home Educating full time not fitting in with my own studies and work have been unfounded. He hates to write and school were forcing it which just made him even more resistant. He is willing and happy to do his learning. When we got home from meeting friends today he asked straight away if he could go back on the ‘dragon games’ and do maths. Sometimes people just don’t fit the ‘box’ the world wants to put them into.
There is a government consultation about proposed new EHE (England) guidance. We will be producing a guide ASAP to help you respond, so no need to rush in.
For now, have a read, BUT DO NOT PANIC ABOUT THE PROPOSED CHANGES: