Joe’s Story

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Joe had managed to mask at school until expectations increased in Y3 when things went rapidly downhill. An initial diagnosis of Asperger’s, dyspraxia and sensory processing disorder (SPD) was refined to PDA; Joe was also prescribed low-dose Prozac to help with his anxiety. These together with a close and open working relationship with school have enabled a dramatic turnaround and Joe has made astounding progress. Joe’s PDA impacts his whole family and has necessitated a real change in parenting style.

I honestly didn’t think anything at all was amiss with my son until he had a major breakdown when he was nearly 8. Looking back now, I can see a few things that I didn’t notice at the time, like lacking friendships, but nothing that stood out as atypical in any major way. So what happened was a real bolt out of the blue.

All of a sudden in Year 3 at school Joe started to exhibit quite extreme behaviour -including threatening to jump out of a window and increasingly violent meltdowns – and his private prep school was simply unable to cope. The only thing I can put this down to was the fact that expectations were ramped up in Year 3 and that previously his intelligence and ability to mask his difficulties meant that he had somehow managed to function. Joe felt very low emotionally and regularly expressed suicidal thoughts, which is devastating to hear coming from an 8 year old child.

Things got so bad that we sought help from a private paediatrician who recommended a multi-disciplinary autism assessment. Joe was diagnosed with Asperger’s, dyspraxia and sensory processing disorder within a matter of weeks. The recommendation was to keep Joe out of school until proper support could be put in place because he was at risk of exclusion. He missed a whole term before we attempted a return, but his highly distressed behaviour continued and after he bit the deputy head he was asked to leave.

In Year 4 Joe started at a different private school where they were aware of his diagnosis and believed they could support him. Sadly his extreme anxiety meant that he was completely unable to cope - during one particularly difficult episode he wound a blind cord around his teacher’s hand and nearly cut off her circulation out of sheer desperation - and lasted only 3 weeks before being asked to leave.

We managed to secure emergency funding from the Local Authority for support at a local primary state school, having made it very clear that it wouldn’t be safe for anyone for Joe to be at school without support especially in a class size double that of his previous schools. He joined on a reduced timetable whilst we applied for a statement. Even with this support, he ran out of school after about 3 weeks and was subsequently restrained in the Head’s office and excluded for 5 days. The Head made it clear that she didn’t want Joe at the school. The LA offered a place in a Pupil Referral Unit but we strongly felt this wouldn’t be right for Joe and wasn’t an appropriate solution after a first exclusion. We persuaded the school to take him back, and luckily the SENCO took Joe on as a bit of a project.

The process of obtaining a statement was fairly straightforward – perhaps the fact that Joe chased the education psychologist away from the school on the day she went in to assess him might have helped! – and Joe was awarded full time 1:1 support. The whole of Year 4 was tricky, with Joe just about managing to hold it together at school but virtually housebound in the evenings and weekends.

We paid for further Speech & Language Therapy and educational psychologist assessments, both of which pointed towards PDA as being the correct diagnosis for Joe. This was subsequently confirmed by a private paediatrician and because Joe’s anxiety levels were through the roof he was prescribed low-dose Prozac. This has made a massive difference to Joe’s life and has had no side effects that we can see. I feel that it fully vindicates the differentiated diagnosis of PDA, because it shows that anxiety is the key to it all and that if you can get this under control things improve significantly. The PDA diagnosis was absolutely key and a real lightbulb moment for us as parents. I made it my mission to educate myself about PDA and now realise that I do many of the recommended strategies automatically.

Years 5 and 6 have gone brilliantly and Joe has made really astounding progress when I think of the position we were in just a short time previously. I think this is down to a combination of school having been amazingly good, us being completely in tune with Joe as a family and his meds helping reduce his anxiety. He is a well-behaved, intelligent, polite and caring boy. He put himself forward to be House Captain and was duly selected following an interview process, he sat his SATs and is expected to at least reach expectations if not exceed, he recently returned from a week's residential and will shortly be taking a lead role in the school production.

We’ve worked in very close and open partnership with school to put in the right support for Joe. He has been fortunate enough to have the same TA throughout and things improved gradually as he came to trust the staff more. Joe is very sensitive to being treated differently to others so everything has to be very flexible and intuitive, reading the situation and being completely attuned to him, matching demands to his ability to cope on the day (for instance, they don’t push it if today things aren’t working – they have seen that it doesn’t affect his academic performance in the long term). Whilst making accommodations to support him, such as being allowed to sit his exams in a separate room and having an hour a week after school support with his teacher to prepare him for what’s to come, expectations have been kept high and he’s always been given every opportunity. I really feel the right placement for Joe is somewhere where the staff are fully on board. He still has ‘moments’ but he feels comfortable to express himself and that nothing will be held against him.

Joe’s PDA has impacted the whole family. My Dad who is very close to Joe had a nervous breakdown, when Joe was going through the diagnosis process, from which he is only just recovering. I’ve become a lot more assertive than I am naturally, and have had to fight and fight to get the right support for my son. Financially we needed help from our family to pay the massive bills for private assessments and therapy. And Joe’s older sister has struggled, both because my focus has inevitably been on her brother and because his behaviour is so unconventional which can understandably cause her embarrassment with her friends.

Our parenting style has also had to be adjusted. We don’t put as many demands on Joe at home as we would have done (but we do get him to help with the things he’s good at, like anything technological, as this boosts his self-esteem). And whilst no parent wants their child to be glued to a screen, we’ve realised just how essential it is for Joe to have this downtime and release, so we build time on the Xbox into our plans for the day, although his reliance of this has become less of late. As Joe is so very attuned to my moods I also have to try very hard to remain as calm as possible.

Now we’re about to embark on senior school. The Local Authority offered a placement in a unit at a mainstream school. We didn’t feel this would be right for Joe because he would be acutely aware of being treated differently. After really persisting we have managed to secure a place for him at a specialist school for boys that are bright but might not cope in mainstream. Whereas Joe didn’t cope well with taster days in other school environments, he seemed comfortable at this school so we’re very much hoping he will continue to grow in confidence and continue to surpass all expectations.

 

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