Well, it’s happened. The boy has finally grown up. In just a few days, he will have reached the age of 18 with only a few hospital trips, one exclusion, a fistful of GCSEs and a set of ambitions which include A levels, a gap year, university and driving. Maybe even a girlfriend.
I remember with a vividness that I wish I could shrug off, the day he was diagnosed. It came following an 18 month wait for an assessment at the hospital during which time, before I kicked off, I discovered we were actually on a waiting list to go on a waiting list. It was time I spent in a perpetual state of “autism watch”. Daily I would diagnose my small son as autistic; then not. He was affectionate and cuddly so he couldn’t be autistic; he licked shoes, flapped his hands and ran round the perimeter of the park so he must be. I was alert to echolalia, stimming and sensory issues. He would gag at clothes he didn’t like and could detect the smallest piece of broccoli blended into a sauce, but still I was in denial. My beautiful little boy was a bit strange, a bit self-contained, appeared often not to hear; but he also liked his people, communicated and (sometimes) joined in. There were some low moments: his third birthday at the soft play centre which he spent exclusively running into the toilet to turn the taps on before running out and laughing; hysterical tantrums if we didn’t drive his preferred route to familiar places and one dreadful night when we arrived at my sister’s and it took me two hours to get him out of the car as he screamed every time I undid the car seat. He would lie on his back for hours spinning the wheel of any toy that had one. Every toy in the playroom would be found turned upside down, wheels in the air. He lined things up, loved Thomas the Tank Engine and had a particular attachment to his helicopter, “that one Harold”.
All the signs were there. Looking back I can’t believe that I didn’t know. But I truly didn’t. I was convinced that he wasn’t autistic. My husband knew, my family knew, the GP knew. I did not know. I had taken my daughter to the GP with a fever when Joseph was just two. At the end of the appointment he asked me if I had any concerns about Joseph. I said we had a few. He offered to refer him but said he was convinced he wasn’t autistic. I persuaded myself he was right. I later saw the referral letter he wrote, in which he said he believed that Joseph had autism. I felt betrayed.
The day of the diagnosis is up there with the worst days of my life – only really eclipsed by being told at the age of 13 that my father had been murdered in Russia where he was working at the time. There were about 7 other professionals in the room as well as the consultant, me and my boy. Ronnie, his dad, had torn his achilles tendon and couldn’t come. It did not cross my mind that I should not go on my own. I had no idea who would be there and what would happen. All I had was a letter with an appointment time and the name of the consultant; there was no explanation of the process at all. I don’t know what I expected, but it certainly wasn’t what took place. There were a lot of them and only one of me. I felt completely ganged up on. They each, in turn tried to engage Joseph, talked to him, observed him and played with him while the consultant asked me all the usual questions about pregnancy and birth (normal) and developmental milestones etc. I was mostly desperately watching him though. He did so well, interacting with the adults, commentating on his play, talking about the cars and the road, coming to life at the mention of helicopters. I was so proud of him, I was convinced he had passed the test.
He did not pass the test.
Whatever the test was, he failed it.
Half way through the appointment, they handed me back my child, the consultant wheeled himself on his chair over to the other side of the room and they all huddled there to discuss Joseph. I occupied him on my knee with a bubble blower, all the time trying to hear what was being said about my son at the far end of the room. Then the consultant turned round on his wheelie chair. “I’m sorry, I think your son has autism”, he said. I don’t remember anything else that was said to me after that. But I genuinely, and to my shame, felt my life was over. I was going to bring up Rainman. Immediately I wanted to know would he go to a mainstream school, would he read and write, would he have friends, would he take exams, get a job, get married? Everything I thought and expected my child would do had been wiped out by one sentence. And it felt like a life sentence.
What I did not understand then, was that I had to grieve for the child I thought I had before embracing the one that had just been given to me.
Later, when I reflected, I realised what an appalling and insensitive assessment process it had been. I subsequently wrote and explained how awful and distressing I had found the appointment; the least they could have done was told me what to expect. Their reply told me that they didn’t do it like that anymore.
It took a long time, probably a good two years at least, to properly come to terms with the diagnosis. Although Ronnie was there straight away, I struggled. I really, really did not want to be the mother of an autistic child. I wasted far too much time and emotional energy worrying about the future, projecting forward, to all the things I thought he would never achieve. I constantly wished that it were different, that he was not autistic, that he was “normal”. I should never have worried: he keeps surprising us so much that we have all learned to let go of expectations, to only look back at where we’ve come and not sweat over where we might end up. But in the early days, there just seemed to be so many obstacles and hurdles to worry about. I wish I’d known then that it would be ok, that we would just deal with each one as they came and that we would learn when to bump and when to dodge.
I used to say that the fact that Joseph was beautiful was what kept him alive. And he was: beautiful, very blonde, gorgeous smile, huge eyes – so handsome almost perfect. He was also very, very hard work. To be honest, when he was little, it is all a bit of a blur. Keeping him safe was a full time job. He was obsessed with turning on the lights and would climb on anything to reach a switch. We always knew where Joseph had been as every light was on. Once I found him clinging white-knuckled to the top bookshelf, hanging on for dear life. Another time he was on the conservatory roof. My neighbour spotted him from her garden. Many things got broken in his wake. Sometimes he would look up at me and say, “I’m sorry, I love you lovely mummy”. He was a clever boy!
The families were brilliant. My sister read about the work of Paul Shattock at Sunderland University and we decided to try the gluten and dairy free diet. When we stopped milk, his behaviour changed almost over night. He calmed, became more verbal, he would ask loads of questions, constantly repeating himself – over and over till you answered him. And sometimes even then he would still repeat the same phrases. But he was with us, in our world, not locked in his. We persevered; he improved.
Little by little we saw real progress. He was sociable and loved being with his family and his cousins. He liked new experiences and enjoyed going to parks and theme parks. Wherever we went, he ran; and I ran after him. His older sister, a daydreamer ambled behind picking flowers. Sometimes we had done three laps of the field by the time she had done one. The dog loved it; I stayed thin.
Joseph did not seem to need a set routine which helped. He slept well and bedtimes were mostly not a problem. He learnt to read. He had always been good at maths but by the age of 8 was actually reading for pleasure – something I never thought he’d do. I was so thankful for books that came in long series. First Horrid Henry, then Beastquest and eventually Harry Potter all claimed his interest.
School was hard. He had an amazing TA at primary school, but a senco who only seemed interested in withdrawing rather than providing support. He used to get hurt in the playground. We were frequently told he brought it on himself. On more than one occasion I went in to fight the battles he could not fight for himself. I think (I hope) it has made me a better headteacher. I’m afraid I am probably a bit too guilty of over-empathising with parents of children with SEN; I’m pretty certain they don’t always want to hear about my child when they have come into talk about theirs, but I vowed never ever to blame the bullying of a vulnerable child on their vulnerability and I try not to mind if parents are angry and adversarial when we have got it wrong for their child.
The worst occasion at primary school was when a girl kicked him so hard, he was hospitalised. The school told me it was an accident. I let them. It was easier that way.
At secondary school he struggled to begin with. He had 11 different TAs at first until we complained. He was often taunted in the corridors because the other pupils liked to see him react to the name-calling. In his early years there he was socially isolated and sometimes victimised. Thankfully though the teasing stopped with the persistence, help and support of a very caring year head. He lost eight PE kits in the first two years and the bus was usually waiting for him rather than the other way round. Homework was a nightmare but we persevered and he developed an after school work habit.
It wasn’t easy, we often felt that we were continually educating the school but by and large the school was great and listened to us and acted on our concerns. We nearly fell out however, over an incident in year 10 which resulted in an exclusion. Joseph had pushed a girl in his Drama lesson (not hard but a push nonetheless) who was insisting he took a part he did not want. He was frustrated and reacted when he should not have done. He was not supported and felt backed into a corner by his peers. He was very upset and spent the day apologising to her. I eventually persuaded the school to commute a two day exclusion to one – although I still was not happy with the punishment. It didn’t help that the decision to exclude came a full day after the incident and he had been back in the lesson since it happened. He thought he had been forgiven and I had to communicate that he had not. He was devastated and spent most of the evening hitting himself in the head. He felt he had blown it.
However, fortunately this was not the case and the same school did also let him put himself forward for one of the (very few) senior student posts in year 11. He delivered his speeches to the whole school with passion and conviction and was voted in. He was so proud and delighted. One of my daughter’s friends asked her sister in his year if she had voted for Joseph. “Everyone voted for Joseph” was the response. He took the role very seriously and enjoyed working with the senior leadership on what could be improved at the school. He was very proud of his school and felt like a real ambassador. In return he had some excellent teaching from teachers who believed in him and liked him. He took their feedback seriously and always tried to learn from his mistakes. I remember asking him how he had managed to improve so much in his English Literature. He told me that he just listened to the teacher’s advice and tried to follow it next time.
If only all students did this, how easy our job would be!
He finished the school on a real high, as a valued member of their community and in the end we are very grateful to the school who worked with us to help our son learn and develop. He got amazing results and ultimately was very happy there.
Physically Joseph has also had difficulties. A combination of very flat feet and ones that point at ten to two has made his gait awkward – but has also turned him into an awesome breaststroker. He struggles with contra lateral movement: coordinating two sides of his body to do different things at once is tough. His father, having developed physical education programmes for primary schools, was characteristically brilliant and played daily physio games with him to get him thinking about and working on coordination. His shoulder stability was weak which made sitting on the carpet or at a desk to write very difficult. There were significant issues with proprioception. He once had a target in his IEP to stand still when talking to someone which was nearly as silly as the one about making eye contact. We rebelled. It was rewritten.
Yet despite the challenges, everything seemed to come together at around the same time. We bought a trampoline. He spent hours stimming on it, but at the same time he was building core strength and stability. He learned to swim with the help of a fantastic, patient and imaginative teacher who helped him to feel the movements through the water. He became brilliant at it. He stopped doing depths and started doing lengths. He swam in the school gala and won, his whole house cheering him on.
The real breakthrough came however when he learned to ride a bike. The first time we all went out to cycle round the local park, he shouted in glee that he felt like a real kid. It was wonderful and heartbreaking at the same time.
Then he learned to ski. Ronnie has always loved the mountains and wanted his family to ski with him so we all went to the local dry ski slope for lessons. After about the tenth lesson, the instructor told my husband that Joseph would never get down a mountain. This was said in front of Joseph. Joseph was so outraged at the insult he was determined to prove him wrong. There was nothing he wanted more than to ski down a mountain with his dad. And he did. The first time he had to stop twice to be sick but now he does the blacks and goes off piste and scares us all. I am so grateful to my amazing husband who stuck it out with him lesson after lesson, taking him away with him, just the two of them – or with friends, but always patiently and tenaciously sorting him out, doing up his ski boots, finding his gloves, replacing his goggles, picking him up and putting his skis back on, and doing it all again the next day because he loved him too much to let an ignorant ski instructor place a ceiling on his ambitions. As a result Joseph has learned that if he wants something and tries hard enough and keeps trying he can do it. He doesn’t cope well with failure, but after the storm has passed, he always has another go.
And now Joseph is going to be 18. He is at college doing A levels and learning to drive. He still has meltdowns, and when they come, they can be spectacular, but are less frequent and shorter lived. He is obsessed with sport and particularly football, is an Arsenal supporter and enjoys student life. He is friendly and popular but doesn’t really go out much. His social life still revolves around doing stuff with his dad. I’m afraid to say I’m a bit of an embarrassment but he mostly puts up with me. I have learned that not being invited to stuff hurts me more than him, but I still can’t help wishing he had a group of mates who would call for him and take him out. He spends a lot of time on the Internet and still isn’t properly capable of looking after himself but is getting better. At least he doesn’t microwave tins anymore and usually remembers to switch the oven off. He no longer flaps his hands but will bounce a ball for a long time to deprocess if he needs to. He’s always been a bit of a chewer and still occasionally shreds his clothes. Plastic bottle tops have become a particular favourite – I find disintegrated and chewed up plastic all over the carpets. His bedroom is disgusting but then so was his sister’s. We worry about how he will cope with disappointment and manage tricky social situations but he has come so far. He looks up to and emulates his sister, now at university. He has seen her success and wants it for himself. She has been amazing for him talking with him, helping him study, explaining social situations and occasionally letting him sit with her and her friends.
He is interested in politics and current affairs. He loves laughing at politicians like Boris Johnson, Farage and Trump. He told his granny off for reading the Daily Mail. She is a devoted Federer fan and he delights in teasing her if Roger is beaten. Similarly he knows everyone’s football team, follows their progress avidly and is merciless when they lose. There is nothing he likes more than seeing someone in the public eye fail but he also has compassion for genuine hardship. He is funny, lazy, bright, ambitious, cheeky, messy and infuriating. He hates upsetting us and will apologise over and over until he feels forgiven. He competes ferociously with his younger brother and does not take losing to him well. I can’t say I blame him.
He has come so far from the boy who licked shoes and turned on all the lights and he still has so much to learn and overcome but he is a beautiful, incredible inspirational young man. He often says he is a lucky boy, but we are the really lucky ones to have him in our lives, enriching it and making us all better people.
Happy Birthday son. We are so proud of you.