This year has been tough on our teen, and we’re only at the beginning of March. There was an issue just after Christmas which I mentioned here, and although school handled it incredibly well, we had ongoing issues because of the effect this had (also discussed in the post). It was a long half term up until February, half term itself was not relaxing as it was just a countdown to going back, and then the anxiety, worry and expectation of a downturn hit again as soon as he was back.

I emailed school and I spoke to the SenCo. I explained the situation and they were very understanding and put support in place in lessons where needed. However, they couldn’t sort out what was going on inside his head, and neither could I. It then occurred to me that a year ago when I was GCSE Options time, he sorted out a clash of subjects while I was exchanging emails with the head of year. Earlier this academic year there was another problem that I was trying to sort out that he gave a concise and logical argument in favour of his point of view.

I deferred the battle to him. I reminded him of his successful track record, and I told him that if this one small aspect of school was as bad as it felt, do something.

He did.

He emailed the SenCo and Head of Year and asked for a meeting. At the meeting he was a calm, composed and eloquent. He explained the problem, explained in detail about how it affected his mental health not just during the lesson, but before and after. He explained why their measures that had been introduced to help him wouldn’t work, and he got the outcome he wanted.

I wouldn’t want to repeat the last few weeks, but I also wouldn’t want to take it away or stop the bad things happen. Our teen is a different person. He is stronger, because he took control and sorted out his problem. He is more confident because of sorting out the problem, but also because he found out he had the backing of the sports team. He is even walking with more self belief and attitude – and his rugby has suddenly reached a new level. I’ve even had a glimpse of teenage grumpiness and grunting!

Dealing with this situation, deciding to sort it out himself and finding a bigger tribe has been invaluable for his mental well-being. He has come out of this stronger, and it’s a fabulous thing to see!

I almost called this post ‘Count your Blessings’ but sometimes it’s very hard to do that when you’re faced with another battle, meltdown or dilemma, so I this one seemed more apt. It’s also a bit of a long one, so bear with me……..

When I was pregnant with our eldest, 24 years ago (yikes!) I imagined a happy baby, and then a toddler who would love books as much as I did. I was a very early reader, so I assumed our baby would be too. My husband was academic at school, like me, and was sporty, so between us we imagined fuss-free schooling, and weekends watching our child playing football matches, swimming in tournaments and horse riding.

I certainly got my wish for a happy baby, and the sporty things happened very early too (he was beating me at Swingball when he was 3!) and he loved being read books but my gut said there was something a little different. However, he was out first, and this was our normal. He struggled in school in reception and year 1, and we finally paid for dyslexia screening. He was on the border of significant and severe dyslexia.

We had a similar ‘thing’ with our youngest. I knew that there was something going on when he was very young & I spoke to the health visitor about it. However, I was dismissed and instead offered counselling (he spent a week in intensive care and another week just in an incubator after he was born) as she thought I was worrying too much, and I needed to be tougher at night when he wouldn’t sleep. Yeah, like that would have helped!

He was screened for dyslexia when he was 7.5, and he was significantly affected by it, so my gut instinct had been right! As I had had suspicions from when he was very young, and because of the issues we had had with our eldest, we did more to help him cope and to help academically, and to stop the cycle of failure.

In addition, our eldest was finally screened for ADHD when he was 16, and he is ‘very’ ADHD (if that’s a thing), but again, in many ways our family lifestyle had already helped him manage his amazing but eclectic way of being.

And then there’s autism – something I had seen but hadn’t – if that makes sense! Looking back, there were so many things that we did or put in place to make life smoother or to help our youngest cope with different situations, and now it is so obvious that it was there from the start, but the struggle for diagnosis didn’t start til he was 10, and we didn’t get the answer we needed (and that he pushed for) until he was almost 14.

So now we have two children who both have barriers and additional needs (plural for each of them – I haven’t mentioned Irlen Syndrome, but overlays and coloured paper are part of the coping mechanisms too), and who are both amazing! Barriers don’t mean our children won’t succeed, or will do badly or won’t manage, they just mean we have to go into their world instead of insisting they come into ours.

We have a young adult who, admittedly, isn’t ‘academic’ (how I hate that term), but who can play any musical instrument he can pick up, who has played sports at a high level, has had England trials for one sport and national rankings for another, who is the most charming, polite and charismatic individual you could ever want to meet, and who is inspiring many through his achievements and empathy. He hasn’t read the book that says children with ADHD, severe dyslexia and OCD won’t achieve, and instead he is just amazing and achieves anything that he puts his mind to.

We also have a teen who is ‘academic’ and who works so hard to fulfil his potential (and my goodness, what potential). He has significant dyslexia, autism (not Asperger’s or HF, autism), clinical anxiety and has to have coloured paper as white triggers visual distress, and he uses his individualism and unique way of thinking to excel in maths, sciences and art. His grades are amazing – way above those of many neurotypical students, and why shouldn’t they be? He is incredibly clever, and academic (because they’re not necessarily the same thing) and will excel at whatever scientific or artistic field he chooses after formal education.

Had you told me 24 years ago that the baby I was carrying and the one that would follow 8 years later would have serious health issues as babies (yes, our eldest was ill as a baby too and had to have regular scans until he was a teen), would have SENDs, mental health issues and we would be battling schools and employers for the next 24+ years, I would have been terrified. I wouldn’t have known what to think, but I would have been sure that I wouldn’t have been able to cope.

However, I would never, ever want any other children. My kids are amazing and inspirational. They brighten every single say – this morning as they were unloading the dishwasher they were making each other laugh, and our eldest had full adhd kick in after having more sleep than usual and was making up songs and singing to the bran flake box! Yes, we might not be able to go away overnight because, well, we just can’t. We might have to avoid cafes and restaurants if they are too noisy. We may have mess all over the house and towels may all end up on the floor of the older one’s bedroom, but we also have laughter and the best kind of chaos and deep conversations and squeeze-all-the-sadness-away hugs, and we are a very together, happy family.

Twenty four years ago, this scenario wouldn’t necessarily have been what I would have chosen, but thank goodness you don’t always get what you want. We are living, and loving, the life we have, and I wouldn’t change a thing!

This morning a Facebook memory popped up that was an interview with Terry Waite about his time when he was held hostage in Beirut. Although the point of the interview was to emphasise the importance of the arts and imagination, the thing that really, really resonated with me was him saying that: ‘This is your life now. Not tomorrow, not yesterday now. And in this moment, don’t be defeated’.

I feel like a bit of a drama queen in a way, as this amazing man was talking about 5 years as a hostage, enduring isolation, beatings, and unimaginable hardship, but his words really spoke to me and how I was feeling last night and this morning after another night sleeping on the floor of our teen’s room.

I sometimes feel like I am struggling with everything, that I should be handling things better, that I shouldn’t be behind at work or the house should be less feral or I could be doing things better to support our family. However, if we had a new born or a young baby and I felt like this, people wouldn’t be surprised at all. Almost everyone who is a parent has felt the exhaustion that a new baby will bring, so people nod, understand and sometimes give unsolicited advice.

We, however, have an anxious, autistic teen, and as I have blogged numerous times before, if you have met one autistic person you have met…. one autistic person, so even if I talked to lots of other parents in the same situation as us, the chances are they would be having a completely different time with different highs and lows! So, we are in unknown, uncharted territory. This is our normal. This is our now.

With our eldest, when he was a teen, sleep was ok but the days were angry. With our youngest, the days are, generally, ok but sleep is the issue. The big plus is that we have 8 years between them so at least the anger stopped before the sleepless nights started!

We are lucky to have two amazing children with amazing brains that sometimes overthink, but more often are, well, amazing. If the downside to that, was angry daytime teenage years or restless nighttime teenage years, then that’s fine. This is our normal, this is now, and we will not be defeated!

After a morning coffee and catch up with friends, putting the world to rights and discussing our teens, a common thread through all teen issues seemed to be a lack of trust and a feeling that their parents have lied.

This was definitely the final straw when our eldest had a tough couple of months when he was in Y11. He was having lots of struggles with hormones & puberty, pressure of GCSEs and pressure from peer groups, but the thing that finally pushed him over the edge into a spiral of anger and a deep sadness was the feeling that we had lied to him.  This all centred on the illness and then death of a close relative, and at the time I thought I was protecting him & sheltering him when he was already very stressed, but he didn’t see it like this. He felt lied to about how bad the situation was, and so that meant there was a trust issue because if we, his safe people, had lied, who could he trust?  I made it worse when I found out because I tried to justify and excuse my actions. For him, my lack of acknowledgement or understanding of how my actions had impacted him added to his negative feelings.

We are all, however, human, and we never stop learning. What happened 7 years ago completely changed what I told my children, and I don’t lie or hide truths from them. At the time, I thought that these were completely different things – but to an angry 16 year old, they’re not.

I now answer questions as honestly and in as much detail as I can. That doesn’t mean that they know everything. A friend as been going through a very tough & difficult time. The boys know that we meet more often, and so have asked if everything is ok. I can’t tell them everything- so this then leads to more honesty. I said something like ‘X is going through a really tough time. There are things I can’t tell you as I need to respect X’s privacy, and because there are other people involved. However, I can tell you that X is ok, they just need a bit more support at the moment.’ That also shows that we can be honest without spreading gossip or breaking a confidence, which is another life lesson.

At a time when everything around them, on them and inside them is changing, our teens need to know they can trust us. Sometimes doing what we think is the right thing and sheltering them actually leads to mistrust as teens (and younger children) tend to know more than we give them credit for. They listen to conversations that we might think they can’t hear, they read our moods – they may read our texts! They also notice if we suddenly have a different code on our phone, or take calls out of earshot, or if our moods or actions change.

We don’t need to tell them everything, and what we do tell them may differ from family to family or even from situation to situation – or you may disagree entirely! But for us, honesty is the best policy, and being more open and transparent has certainly helped deal with teen issues. We have found that the more open and honest we are with them, the more honest and open they are with us.

Our eldest is no longer a child, he is a young adult who is trying to find his way in the world, and yet the problem and issues he has had in education over the last 21 years since he started at a day nursery still plague him, affect him and make any kind of learning miserable.

We now find ourselves back to a point where going to college (day release) has triggered the biggest panic attack for years, and he really can’t face going back on this course. He is looking at other courses, and doesn’t want education to ‘beat’ him, but bad memories have been made on this course, and he can’t see a way back.

In many ways, this is similar to my previous blog, talking about the Intense World Syndrome and a heightened fear response and lowered fear extinction in people with ASD, and as there is a lot of consensus out there that there are overlaps between many of the neurodiverse conditions, this is definitely a possibility, or a contributing factor.

What is compounding this, however, is a fear of what might happen that is driven by real, traumatic memories and experiences rather than heightened fear as discussed before. There is a school of thought that children with learning barriers, especially ADHD, which also increases the risk of depression, anxiety and other mental health conditions, actually develop a form of PTSD (good link here) which means than any small repeat of any of the bad experiences from their past could trigger an unexpectedly acute reaction. This would then lead to memories of failure, sadness, things being out of control and just unhappiness being brought to the surface. Even when the current trigger has been resolved, there are years of bad experiences that also need resolving.

I need to research this more, and look at ways to help our skware pegs move on – would the therapies they use for PTSD help here, or would other things be better? I have worked with ex-service people with PTSD, and ecotherapy and animal therapies have helped – and this is something that I instinctively do with my children and with myself. If I find anything, I will report back.

As with my previous post, I am sharing this so if parents, carers, tutors or friends of anyone with ADHD think that there has been an over-reaction (and I am guilty of thoughts like this), maybe we need to take a step back, reflect and see if we can see a reason why.

We have had a horrendous week. Things have happened that have caused anxiety levels to go through the roof, and not just for one square peg, for both of them. This blog relates to ASD. The only that will follow relates to ADHD.

This is my bed from last night, sleeping on the floor of my teen’s room on a pile of old quilts as the air bed as a puncture to ensure he was calm enough to sleep and get through school today, and I’ll probably be back there tonight!

This blog isn’t about the cause of the latest sh*tstorm that we’re going through (tried to find an alternative word, but there just isn’t one!), that’s all being sorted. This is about the anxiety itself, and why this is going to rumble on for a while yet.

Just after Christmas, I reviewed the book ‘The boy who felt too much’ (link here), and in the book, ‘The Intense World Syndrome’ is mentioned. Me being me, I have searched for and found the paper, and read it. It is fascinating reading and it fits with our situation on a day to day basis, not just right now. A brief overview is that the cerebral cortex and the amygdala in the ASD brain is hypersensitive to, well, anything. Lights, sounds, tastes, smells are all included, but so are memories, and this is where it gets really interesting. The ASD brain is programmed to be incredibly self-protecting. Bad memories and bad events are logged and remembered much more than in the neurotypical brain.

Many studies have suggested that some autistic children have heightened anxiety levels and phobias. Markram et al (2007) found similar traits in their ASD rats, especially when compared to the neurotypical rats.; they reacted to the fear stimulus much quicker than the ‘normal’ rats. The researchers also found that once the fear memory was there, it took much longer (if at all) to extinguish. They did point out that this is not necessarily a generalised thing; many people with ASD will have this response and holding onto the fear memories, but many may not. As with everything else with ASD (or ADHD or Dyslexia etc), just because Fred acts like this doesn’t mean that Bob will too.

So, what does this mean in an every day dealing with life’s ups and downs kind of way? I can really relate to this theory. Our youngest can be very rigid with things that have gone wrong. If something bad happens at a cafe or restaurant, we can’t go back. If a family friend or relative has repeated bad behaviour (or at least what he perceived as bad behaviour) and did not apologise, nothing will get him to revisit the memory or forgive that person. There are also fears about going to places, doing activities or eating food that he associates with negative or fearful feelings. We can logically discuss ways to get over this particular event/person/activity/place and he understands the logic, but cannot work his way through it.

The situation we find ourselves in right now relates to this entirely. The event last week has been dealt with, but it was so bad (in his eyes) that he just can’t move past it. His head is full of what if situations as well as reliving what happened last week. Right now, I am struggling to see how we are going to get through this.

I need to stress that the event itself has no relevance here. It could have been anything but if it crossed ‘the line’ it would have been bad enough to illicit this response.

I hope that by sharing this, if you teach a child or young adult with ASD, or if you are a parent or carer and you find yourself in a similar situation, then you will realise that logic, punishment, reward or whatever parenting magic you have up your sleeve will probably have very little effect. If you do find something that works, please let me know!

‘the boy who felt too much’ by Lorenz Wenger (Arcade Publishing, New York, ISBN:9781948924788 hardback, 9781948924795 ebook) was a book I asked for as Christmas present – and I read it cover to cover yesterday. Admittedly it’s not a very long book (222 pages including acknowledgements), but I found it very, very interesting, honest and the scientific research that is within has confirmed many things that I suspected and that we are doing most things right.

It’s the story about renowned neuro-scientist Henry Markram’s research into Autism that was driven by his young son’s diagnosis. It also talks about the struggle to get a diagnosis for Kai, and also their journey with him – and it’was such a relief to see a world leader in neuroscience make the same mistakes the rest of us have.

Their research has shown that rather than being unable to feel or feeling less, autistic people feel more; the region of the brain that ‘feels’ be that joy, fear, worry feels more. Therefore the fear response is greater and the memory of that response will last for longer. Surprises are usually seen as a negative thing because something unexpected will trigger a chain reaction of feelings, and as these will be felt more, it isn’t a good thing. In addition: ‘Autistic people are neither oblivious to feelings, nor do they lack empathy. They just experience the world as so painful that they retreat.‘ and also ‘Individuals with autism spectrum disorder often report that looking in the eyes of others in uncomfortable for them, that it is terribly stressful, or that “it burns”. Traditional accounts have suggested that ASD is characterized by a fundemental lack of interpersonal interest; however, the results of out study align with other recent studies showing oversensitivity.‘

This definitely fits with my limited observations. I obviously live with a young person who is austistic, and so I have experienced the highs a lows first hand, but he is just one person with ASD. I have also taught autistic teens and young adults, and every person is different. However, they all have certain things in common. Most have been overwhelmed by different stimuli, the stimuli may be different, and ranged from crowds to smells to swearing to noise to heat, and so on, but it was when the stimuli got too much that they struggled where most neurotypicals would be fine – they were over stimulated, and so were oversensitive. The book also talks about the need to retreat into a bubble to get away from the real world – and again, this is something we see regularly!

Another excerpt from the book which really, really spoke to me was this:

‘It’s hard on parents when their parents are sick or disabled. Many doctors and psychologists have taken an interest in this burden writing books and essays about it. Bouma and Schweitzer, Hastings and Johnson, Sanders, Morgan, Weiss, all the usual suspects have weighed in. They all reached the same conclusion: no chronic illness, no disorder or disability causes parents more suffering than autism. Particularly if it’s a severe case of autism and the child withdraws from them entirely, offering them no recognizable love, no words, no smiles, their grief is as deep as humanly possible.

The parents cited in these studies all say variations on the same things: It costs you so much strength. You feel wired constantly. You’re always looking out for them. You stop doing things for yourself. You don’t go out anymore. You feel ashamed. Friends stop visiting you. You stop spending time with your partner because you’re both too tired.’

It’s the last sentence that got to me. We do so much as a partnership, but it is exhausting, and we often sit in the evenings absolutely shattered and barely talking. We spend lots of time together, but there isn’t much conversation as we are both empty from juggling work and family. To read that this is normal, that we’re not alone feeling like this has been such a relief – which is why I’ve shared it with you. I am going to make sure that we make an effort to do things together – even if it’s just a trip to the supermarket or walking the dog. If nights out are difficult, we’ll make the most of escapes in the day time.

The book itself is easy to read, there aren’t many parent-guilt parts (there is a bit about how things that happen in the womb can trigger ASD in susceptible foetuses, and another about how stimulation in early years can also have an effect on the severity of ASD, but that’s about it). They do test on rats to investigate brain activity (they breed rats with autism, and then they are killed and the brains investigated) which seems a little harsh as they talk about the problems with the experiments and the retests, but until there is an artificial brain, there isn’t a viable alternative for these kinds of experiments, and so there is the dilemma about whether animal testing is a necessary evil, or just an evil. To be honest, they found things out that I suspected, but without the lab evidence the rest of the scientific community would have viewed their hypotheses as either untested or anecdotally proven.

Animal testing aside, I would definitely recommend this to anyone who has a link with an autistic individual, be that through family, work or friendship. My next step is to find the scientific studies and data as they have published everything as open access, so Google Scholar should be able to find the published articles. When I have found them & read them I will report back!

There are many memes on social media about how our wonderful Skware Pegs can feel isolated, how they can feel trapped or unliked or that there is no one out there for them to like, but parenting the Skware Peg can feel quite isolating too – and I have written about this before (here and here)

I am lucky that I am part of a team – we (my husband and I) are a unit. We both deal with the ups and downs of parenting, we both share the laughter and the tears. However, I work part time and my main job is parenting. My husband works ridiculous hours as his main job, and so a lot of the parenting issues fall to me.

I have never been the most social of people – give me in depth conversations in a small groups rather than big nights out, any day – but having a child who didn’t do play dates, and now doesn’t play online, socialise or want to see many of his peers out of school exacerbates the issue. I do have some very, very good friends at school, but I don’t become part of a wider group because I can’t really do late nights, definitely can’t stay away overnight, and this then becomes a habit that is hard to break. My husband doesn’t have a busy social life either, but his job means that he has work colleagues and occasional travels.

On top of this is the isolating feeling that we are the only ones going through what we are going through. I have written before about my normal being different to your normal (here), and I am really feeling that at the moment! Our eldest was a door slamming, shouting teen. Our youngest withdraws until the stress causes migraines. I really miss the door slamming at times (something I didn’t think I’d ever feel when we were in the midst of it 7 years ago). So, even two siblings who have been brought up the same, in the same family have completely different experiences, and give us completely different experiences.

I could talk to another parent with boys who have ADHD and ASD. We could chat about our ups and downs, but they would be different. I am part of a small WhatsApp group where the parents all have children who are autistic. Some of there stories make me feel like a fraud, especially when it comes to stories of toddler years, because although it was tough at times, we had already gone through it once with a neuro-diverse child, so our normal was never ‘normal’, we just did what we had to do. We managed, we used coping mechanisms, and we were OK. Other stories make me feel jealous (which feels very odd to admit to). You all sleep all night every night in your own beds?? You get to go out and go away for weekends?? You can buy more than one brand of cheese, and have never felt the fear of standing in the only supermarket that sells the brand of cheese he eats and seeing an empty shelf??

I get that all parents have this, that no two children, even identical twins, will be the same, but children with additional needs have different milestones, have different targets, have different successes, so we can’t even look through a parenting book to see where we should be right now, as there isn’t a book written for us. So it gets hard because we can’t share our experiences like other people, and our social media feeds look like all we think about is ASD, ADHD, ODD, Dyslexia, Dyspraxia or whatever. It’s always at the front of our thoughts, but the shares are to try and get people to appreciate what we do, day in, day out.

And I think that’s my point. No one has parented our children and their individual additional needs, so no one knows what we’re going through. No one knows our relief of a Sunday morning pre-school stress migraine only lasting 2 hours, with minimal vomiting at the end of it. No one knows our relief when a potential explosive anger episode diffuses with a slammed door and loud music. Other Skware Peg parents will have their own additional needs to deal with. They may be similar, but they won’t be the same. And the thought that we are the only ones going through this sometimes feels isolating.