My Sunday Photo: 8.4.18

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School SEND Provision – Beginning the fight for my child

Today a report from the charity Austica revealed that premature deaths amongst autistic people are at disturbing levels, with certain groups with the condition dying a staggering 30 years younger than the general population.

Perhaps even more distressing are the high rates of suicide amongst autistic people, with those possessing no learning difficulties being nine times more likely to die from suicide when compared to the rest of the population.

As a mother of a recently diagnosed autistic child, this report makes frightening reading, and at this point I can’t help wondering how much stress and mental health issues might have contributed to these untimely deaths. The stress of being expected to act “normal” and conform in a neuro-typical world.

At age 6, my son has already suffered an unacceptable level of stress for my liking. Particularly in the school environment.

The stress of trying and failing to understand and fit in with his peers. The stress of the busy and noisy classroom, which does not sit well with his sensory processing disorder. The stress of sitting still for prolonged periods of time when his hyposensitive areas require constant movement to satisfy his sensory craving. The stress of the rapid fire pace at which he is required to learn, and the high volume of work he is required to complete on a daily basis – all the more challenging for a child with thought processing and short term memory issues. And yet despite his difficulties, he is currently expected to just “get on with it” and knuckle down like every other normal child. To learn in precisely the same way and to churn out the same outstanding results.

The stress he, as a young boy, is under feels a catastrophic failure.

I know he is a bright boy. I have his autism assessment report to prove it:

• 97th percentile in the maths assessment – age equivalent of an 8 year old
• 89th percentile in his spelling assessment – age equivalent of a 7.7 year old
• 79th percentile in his reading assessment – age equivalent of a 7.3 year old

… to name but a few areas.

And yet, just a few days after receiving this report, I was sat in his teacher’s classroom being told that if he didn’t “buck up” in his Maths and English (handwriting) he would not meet the national standards required at the end of the year.

I listened to them tell me that despite my son obviously knowing the answers to almost every maths question, they are not impressed by his inability to write down his calculations in his workbook. The fact he uses dots to show his addition, when they only permit it for multiplication or division. The fact that when he has to sit a timed test he will not have time to draw dots.

I listened to them tell me that his handwriting is sloppy, that he rushes and unless he has a teaching assistant sat next to him, they are wasting their time. That he needs to start consistently using capital letters, finger spaces, commas, full stops and the correct flicks/leads to join all his letters. The insinuation was that he was slacking.

But in taking this simplistic and neuro-typical view, I fear they are missing the many subtle yet significant difficulties my son possesses and in doing so are placing even more stress on him and missing the opportunity to realise his true potential.

How would you deal with learning to write if you suffered from thought processing delay and short term memory problems? How would you deal with remembering and processing multiple instructions to include capital letters, full stops, commas, flicks, leads, finger spaces (and next week exclamation marks!) if you found it difficult to remember single instructions? And how easy would you find this requirement if your need for constant sensory input meant you struggled to sit still for more than a few seconds at a time and you found the noise of your peers, the lights and sounds of the classroom distracting and even painful? Wouldn’t you rush? Would you find it easy?

They wanted to send him home with more homework until he improves. They want to keep him in at playtimes to practice until he meets the required standards.

I said “no”.

My 6 year old boy doesn’t need MORE homework. He needs more space and time to be a child. More space to unwind from the stress and pressure of a school environment that pushes him to achieve so much so fast . And more support at school from people who understand his differences and needs.

So having won the battle to have him diagnosed, here is where my next fight begins. The fight for a suitable education, for his right to reach his potential, for his right to be understood, supported and accepted for who he is, not for who they want him to be.

I understand that his diagnosis is just a few months old, and that his school and everyone who know him need time and help to adjust. But I’m impatient for change. I’m impatient to provide my son the happiest and healthiest future possible. One where he never ever becomes part of a terrifying statistic.

“Girls With Autism” – a response

Last week, ITV screened a programme called “Girls with Autism”.

It centred around a Special School named Limpsfield Grange for girls aged 11-16 with Autism and featured a girl named Beth who has a PDA diagnosis.

I was excited to watch it, and publicised it to my friends as I was keen to encourage greater awareness of this lesser known autism spectrum disorder and perhaps provide a glimpse into our life raising a boy with suspected PDA.

But having watched the programme, I came away concerned that the message conveyed about PDA was wrong and quite contrary to the guidance provided by the PDA Society.

My biggest issue centred on the suggestion made by the teachers that what the student needed was “tough love” as she was no different to anybody else. They also stated that they needed to “flood her with praise” so she would learn that the more she participates, the more praise she would receive.

The Head teacher went on to state that “With Pathological Demand Avoidance we have to put a very tight, rigid structure around that student and she will not like it…. and it’s a bit like reigning a horse in and training a horse”.

My heart sank.

I was filled with disappointment.

Rather than highlight the recommended professional guidance for parenting and teaching a child with PDA, the school seemed to be endorsing exactly the type of behaviour modification techniques that would send a PDA child into meltdown. And the description of PDA children as horses that needed training and no different to anybody else just made me angry.

My child is NO horse and he certainly doesn’t need reigning in and training – and it is precisely the fact that he isn’t like everybody else that means traditional parenting techniques and “tough love” don’t work.

Believe me, I and many other parents with diagnosed or suspected PDA children will have already exhausted the tough love approach, and for me, having consistently applied firm boundaries and consequences for years with disastrous results, the thought that less informed people might watch this programme and kindly suggest to me that I need to be stricter and more rigid in my parenting makes my toes curl.

The concept of using lots of praise can also be troublesome for individuals with PDA, as it can raise anxiety levels. Praise is better received indirectly – for example, if they overhear you telling somebody else how well they have done. This is certainly the case for my son, who is noticeably uncomfortable if he receives too much direct praise and will “disengage” immediately from the conversation.

The PDA Society have since issued a statement confirming that some of the comments made in the programme appear to be at odds with the recommended guidelines for children with PDA.

However, since the documentary was aired, I have been fortunate enough to read further explanation from both Beth and her mother regarding the techniques the school has successfully adopted, and it is clear that these few unfortunate statements are not representative of the excellent work that the school have done to support and educate Beth. They have in fact put in place an individual and tailored plan to deal with the underlying anxieties and demonstrate to Beth that she can tolerate a level of demand. This approach fills me with much hope, that with the right diagnosis and support, my son may have a brighter future ahead.

Therefore, on reflection, I feel that the issues lie with the editing/lack of context, rather than the approach of the school itself, and I am grateful to Beth and her family for generously appearing and raising the profile of PDA.

If you watched the programme and would like to understand more about Pathological Demand Avoidance and the recommended parenting and education strategies, please consult the PDA Society website here.

When things get a little bit rough

So this is my first post in a while. Sorry about that. Slacking. But if I’m honest, life has just been a teensy bit taxing.

Don’t get me wrong, I’m used to inhabiting that space. Life with my 5 year old has always bordered on a soap opera, but the last few months have been especially rough in many respects.

My avid followers (if I still have any) will remember my last post, which outlined the struggles my DS1 was having at school with teasing and isolation. It’s fair to say that my biggest little man’s issues in that area rumble on, and despite my repeated efforts to work with the school, arrange play dates and boost his confidence, it all came to an ugly head the night he tried to destroy my house.

The week had begun in a bumpy fashion, with his return from school on the Monday with a graze covering his left cheek, a fat lip, sore tooth and a graze on his right thigh which had somehow occurred despite him wearing school trousers. I was concerned, but he stated that he had fallen playing chase, so I encouraged him to take special care when running, and put it down to experience. The following day, I collected him from childminders after school and, as was customary in monitoring how the schools “buddying” system was working for him, I asked him who he had played with in the playground. He mentioned he had been playing with a particular boy, not his usual buddies, but seemed happy enough, so I asked no further and assumed all was well.

However, once home, a rather benign decision to refuse him a snack 10 minutes before his dinner was ready, sparked a quite terrifyingly angry outburst. At first he shouted and called me rude names, and limped off into the other room to sulk. When that didn’t get his desired outcome he returned to continue the argument, and when I again refused to join in, he threw the DVD remote control across the kitchen until it smashed against the breakfast bar and dropped to the floor.

At this point I told him that I would confiscate the DVD he was waiting to watch as a consequence and went into the living room to remove it from the DVD player. This decision sparked in DS1 a rage that led to a quite horrific and prolonged rampage. I won’t re-iterate the full sequence of events, but it involved him punching me, biting me, upturning the entire contents of the living room (including objects as big as him) and hurling them into the glass double doors, as well as shouting hurtful and insulting comments. Eventually, scared for my youngest son’s safety, I had no choice but to carry him up to his bedroom to calm down and after a period of resistance, he stayed there long enough to fall silent.

When I returned to his room, he was sat, in just his underwear, sulking on the floor. I sat with him, and asked him to explain why he had acted in such a naughty and scary manner when he knew that it wasn’t right. Turning to me, with his eyes tearing up, he said that he was sad because the children in the playground kept forgetting to play with him and he was finding Year 1 too hard. Without going into detail, I raised the issue with his school again and met with a parent support advisor to agree some interventions.

We have the odd breakthrough moment, after 3 weeks of “observing” the Taekwondo class we enrolled him on to boost his confidence, he now participates happily, seeming to thoroughly enjoy some quite brutal and exhausting combat sequences. He is also just one sticker away from completing his Reward chart after 5 weeks of trying to behave. When he gets that sticker, a very expensive and prized piece of Lego will be his. But we still have some really bad days. We are by no means out of the woods yet. Its going to be a long journey I guess.

Then there is our littlest man. DS2. Fortunately, the 4 month sleep regression passed in a few weeks, but has been followed by numerous new trying “phases”. I stupidly thought that being my second baby I’d be better equipped to handle the hard times, but I’m learning fast that each and every baby is different, and what worked with my first son DOES NOT work at all with this fella.

We’ve had the teething tetchiness (non stop whinging), vaccination aftermath (6 hours of screaming at ear splitting volume), separation anxiety (ever tried to poo with a baby on your lap?), nap refusals, night waking, a new need to be rocked to sleep and now weaning difficulties (fusspot with a major sweet tooth).

I know these things are pretty standard in many a baby, so I’m not claiming any particular hardship, but by god the two of them have kept me busy these past 3 months. Gone is the zen-like attitude I was determined to cling onto second time around and in its place is a slightly weary determination just to survive most days.

Of course it isn’t all bad, for every low there is usually a high… Our littlest tyrant acquires new skills all the time and seeing him and his big bro together is a touching sight, I’m just hoping I’m due a brief calm in the storm before I go bald.

When your child just doesn’t fit in

Ever since I decided to have children, it has always been my biggest fear that they might be bullied or left out at school.

I think every parent is troubled by the thought of their kid stepping across the threshold of the school gates on their own and being left out, teased or worse still, bullied. However, I was particularly concerned with how my first son would manage at school since the day he was excluded from nursery aged 2 for biting another child.

Up until that point he had been an outgoing, sociable boy, who would cuddle and smile at every child. However, when the nursery told me he had to leave because he was biting children, (which it turns out is pretty normal for a 2 year old) it set in my mind an unnatural level of paranoia about his behaviour amongst his peers and since that very day, I have been concerned that he wouldn’t make friends at school.

Well now that time has come.

In preschool he was largely disinterested in other kids. Whilst the other children would gravitate towards him and call for him at drop off, my son was quite happy to play alone. He was determined, impatient and uncompromising, and would rather do as he pleased than sacrifice his own wants for the sake of joining in.

But by the end of preschool he had established a few early friendships and in reception, these developed into strong bonds.

Unfortunately, as he returned from summer break and entered year 1 last September it all started to go wrong.

His very best friend had made a new friend during the holidays and neither were keen to let him join in. But he did try, for a while. Until he had had enough of being physically hurt, at which point he came home and told me what was happening.

My heart heavy for him, I resolved to help him repair some friendships by organising play dates after school. It wasn’t easy with a 2 month old baby, but we needed to rally around our little man so I got busy contacting mums.

I also told his school who agreed to buddy him up at play times.

It worked, or so I thought. Until recently.

Shortly before Christmas my son’s behaviour began to deteriorate. He was misbehaving non stop, spoiling for an argument and lashing out at everything we said.

Turns out he was also displaying signs of distress at school.

When I finally realised something was wrong and asked him, he told me in tears that he had no friends as his usual gang were again teasing him and leaving him out, and now an additional two kids were physically attacking him in the football area. He had taken to playing alone at school because the alternatives were so miserable.

I had noticed the abundance of bruises on his legs recently, and was so concerned I genuinely thought his ITP (platelet disorder) had returned, but now it all made sense. And I’m angry with myself that I didn’t spot it earlier.

But as well as the anger, I’m heart broken that my beautiful, unique, charismatic little boy is being treated like this and I can’t protect him.

Christmas was tough. His behaviour was challenging and his confidence and self esteem was so low. It took a lot of time and effort to get a little sparkle back in those eyes. But we did get it back for a week or so.

Until he returned to school. I felt sick the day he went back. Sick that I couldn’t go in with him and make it better. I’d do anything to fix it for him.

So for now I’m doing my best from the sidelines, but he tells me daily he doesn’t want to go and frankly, I don’t blame him.

I can only hope that in time my efforts to make him some new friends and boost his self esteem and confidence through martial arts, along with lots of cuddles and reassurance at home will see him through this rough patch, because my heart hurts everyday to see him struggle like this.

And I wish that kids would just be kind to each other. Teach your kids to be kind. Because one day it might be them.