When people hear that our son has anxieties and has sleep problems, they tend to give us the advice I would have given other people 12 years ago before this became our normal.

Have you tried relaxation tapes? Yes – different types, genres, voices, adults, children’s, music, quiet and many more. There can’t be many we haven’t tried over the years. He doesn’t like them and won’t tolerate the idea of them at the moment.  That doesn’t mean he won’t in the future, but right now relaxation tapes are not a solution and just add to the stress.

Have you tried meditation? Yes, and, like relaxation tapes, they don’t seem to work, so we have adapted our own versions. We do maths meditation where he has to count back in 3s from 306, for example (although I have to make sure that it will end in zero or the stress levels rise again). We also do A~Z of Marvel characters/Pokemon creatures or people he doesn’t like. This focuses his mind without him having to be aware of it emptying or switching off.

What about breathing? We do variations of breathing. He cannot and will not focus on breathing for any length of time (yes, there is a pattern here which I will address in a mo), so we do things like ‘imagine you’re blowing up a balloon’ or count 5 steady breaths then go back to breathing as normal.

I’ve read that grounding with 5 things you can see, 4 you can hear etc is very good for anxieties? Yep, tried that too. Again, we do our own variation. We are very rude to the general public, which lifts his mood. It might be ‘5 horrific dress combinations you can see, 4 awful hairstyles, 3 strange couples’ and so on. I think this works well as it makes being in a crowded place slightly more tolerable, he is allowed to be rude about people (but we do make sure we use an inside voice), and other people seem to be different and we feel quite normal.

Lavender? He actually hates the smell of lavender, but I am trained in essential oils for animals which is a bit different to aromatherapy in humans, and sometimes essential oils do work for him. His go to oils tend to be grapefruit, bergamot and juniper, although these can change.

Mindfulness, that’s the latest thing. Have you tried mindfulness? Actually, using our own variation on mindfulness is beginning to work. I tried it last night in desperation as I needed to sleep, and he needed to switch his mind off.  He was allowed to lie however was comfortable, he didn’t have to close his eyes or take deep breaths and instead, to begin with, he just had to concentrate on his legs and see what parts were touching the mattress and what parts weren’t (most of it was, but the backs of his knees weren’t). We then repeated this with parts touching the duvet, and spread it all over his body.  Because I hadn’t made him close his eyes, he was engaged and intrigued.  We then did do breathing, but not how you might think. I told him to breathe through his nose and concentrate on how his nose felt. How far did the cold go in, were his nostrils moving? Could he make his nostrils move more? We then did mouth breathing with similar exercises. Was his tongue cold, were his teeth cold (mine hurt) and then we tried to do silent mouth breathing, and both looked like strange basking sharks. We did various other exercises, and although he wasn’t fully relaxed and about to sleep, he was no longer stressing with a busy mind, and then settled down.  He won’t want to run through these by himself yet, but I felt like it was a bit of a breakthrough moment. I’m sure mindfulness trainers and practitioners will feel that this isn’t true mindfulness, but he was focused on the here and now rather than what happened last week, what’s happening this week and how long there is at school after half term until Christmas, and once he was focused, the stressors started to disappear and he slept all night, which meant I slept all night too.

The problem he has with relaxation tapes, meditation, breathing etc is that you have to empty your mind, and, at the moment, he really can’t do that. His mind is full and busy and amazing, and he thinks about ways to improve space travel, alternate universes, if the universe itself could be a sentient being as well as ‘normal’ things such as Minecraft, Pokemon and Marvel. However, his mind also worries and stresses and fills itself with thoughts that keep him awake at night.  If he tries to empty his mind, more thoughts fill the space. He now gets stressed at the thought of doing these, and that makes things worse before we start, so we adapt and create new variations. Some of these do work, some don’t.

If you are trying to help a parent of a child with additional needs and they dismiss or say no to everything you suggest, they are not being difficult, but the chances are they’ve tried it before and it didn’t work. If it worked for ‘someone’s friend’s daughter’s best pal’, it might not work for us, so please don’t be offended if we are sceptical or ask for more details.  We do appreciate people helping and there might just be something we haven’t thought of, but we live with this 24/7 and read, Google, and try to absorb everything that’s out there. If we roll our eyes, laugh or cringe, it’s nothing personal, it’s just that we’ve gone down that road already and it didn’t work.

Every person is different, and so are the coping mechanisms, therapies and answers that will work for us.

 

 

There is a saying that I seem to be using more and more these days, and that is that you can’t drink or pour from an empty cup. This is true for everyone, especially parents, but as a parent of children with additional needs, I need to remember this on a daily basis.

I am lucky that my children’s needs aren’t too ‘additional’, and with one at uni and one at secondary school, on the whole life is much easier than it was even 2 years ago. However, I find that when my children are stressed, I am stressed as I am either trying to help them deal with their stressor, or I feel helpless because I can’t help. Our youngest doesn’t sleep well when things are bothering him, and so with the change from primary to secondary school and the associated stress, it is over 8 weeks since I have had more than two or three nights uninterrupted sleep. With school, work, hobbies and our animals, I can’t have a lie in, even at weekends, so, to coin another phrase often seen on social media, my tired is tired.

We had an appointment at CAMHS earlier this month to discuss our youngest’s ASD assessment (not ASD, but he does have anxieties and some ASD traits), and I kept trying to tell our caseworker that I was so tired all the time, and I needed help.  I needed answers and solutions. One of the conversations went a little like this:

Me: I am really worried that he will slip into a depression. There have been times when I felt that he was in a negative spiral, and it scared me.

CW: Did he become depressed?

Me: No, because I did everything in my power to stop that happening. I worked bloody hard, and he came out of it.

CW: So what would CAMHS add to this? You are doing a fantastic job, but parenting a child with additional needs is hard work, and it is tiring.  Nothing can change that.

Until this point I was cross that everything we had done meant that our son couldn’t have extra help, and he wouldn’t benefit from interventions or counselling, but this was a lightbulb moment for me; we are doing a really good job, and our efforts (and the bags under my eyes) means that he doesn’t need extra help or interventions at the moment. We are doing OK, in fact, I think we are doing really well. Our eldest is on a university course that he loves, and seems to be enjoying education for the first time since…..well….ever, and our youngest is settling into secondary school, has been rugby captain for two matches and has been nominated as a year spokesperson on a school visit – not bad for a child with social anxieties and stresses.

But I also realised that I need to take time to be alone, and that my husband and I need to take time to be a couple. I need to refill my cup (be that a walk with the dog, a long soak in the bath without interruptions about school uniform, homework or clean pants, or a night out with friends), and I need to refill my cup without any guilt or constant phone checking.

I did have a mini-meltdown at the beginning of this term, when our eldest was swapping courses and our youngest was overwhelmed with school. I shocked myself, and him, when I snapped at our eldest ‘I can’t do this at the moment, I am empty’. And I was, so I left paperwork, housework and gardening and I had an hour or two crafting watching trash day time TV, and it did the trick. I felt no guilt at all, and instead I felt myself filling back up, refreshed and ready to be supermum again and sort out all the problems.

The message from this,  then, is that as parents, we all face different challenges & struggles. We don’t have all the answers, but then we’re not supposed to. This is an adventure, a rollercoaster, not an easy ride. We have to enjoy the highs, and hold on tight, dig deep and trust our instincts through the lows.  We have to realise that this is real life, not a rose-tinted Instagram account of smiles and #soblessed picture opportunities. We also need to take time to refill. After all, this is kick-ass parenting, and we’re rocking it!!

Has it really been 9 months since my last post???? Wow, time flies when you’re busy juggling work, family, animals, and everything else in between!!

So, last time I blogged, we were with CAMHS waiting to see what was going to happen next.  Lots, and nothing, is the succinct answer.

I went on a Timid to Tiger course which is aimed at parents of anxious children.  It was a 10 week course, at CAMHS on a Monday morning, and there was a wide range of parenting/children issues, which is, obviously, confidential.  I wouldn’t want them writing about me, so I am not going to write about any of them. I also had to argue the case for an ASD assessment as his report from school was borderline (but it’s a lovely, small school with 20 in a class). They listened to me, and the assessment in is July.

Back to Timid to Tiger and what I learnt and what I felt was useful. First of all, I learnt that we are not alone in this mad childhood mental health jungle.  I also learnt that we are not the only ones who feel we are blindly feeling are way, and making it all up as we go along.  I also learnt, thank goodness, that we aren’t doing that badly in the grand scheme of things. However, the main realisation was that unless you live the life we live, you can give us all the theories and plans in the world, but every child is different, and there is no guarantee that by doing A, B and then C that X, Y and then Z automatically follow.

There was an abundance of very good, very useful advice in the sessions. We need to praise more, to comment on activities rather than asking why (even when asking ‘Why are you doing that?’ in a positive way, you can make the child think ‘Should I be doing this?). We need to be firm and direct in instructions, and not to enter arguments with the children (so much easier in practice than in reality).  We need to praise and acknowledge the little things, and we need to set boundaries and rules and have the courage to reinforce them. We tweaked our parenting, and all of these helped.  It’s not that we didn’t do them, it’s just that we didn’t do them all the time.  It’s so easy after a long day at work to let them zone out on their screens while we zone out on ours, but it’s also easy to have a conversation, to talk about our days and to share our experiences.

Bad bedtimes have been a problem in our house for the last 19 years. Neither of my children were good at going to bed, and with our youngest, bedtime is still an issue at 11. He doesn’t like to be upstairs going to sleep if we’re still downstairs (although he’s happy to spend the evening up there by himself when it’s not bedtime???). He likes me to tuck him in, to give him a hug and then put his background noise on – and as he’s my youngest, I admit that I like that too.  The time will come all to soon when I am not needed at bedtime. Does that mean that I am part of the problem too?

Timid to Tiger suggested a stairway to bravery, and that when we had a calm, bed time with minimal parent input he would be happier at sleepovers. We planned, we chose the stairs to better bedtimes together, we agreed on rewards for reaching each step.  We even made reward cards and bought stickers. It was so exciting, I thought we were going to crack this one.

No, 6 months after the programme finished, I am still spending more nights than not putting the world to rights, sorting out school problems or talking him out of a meltdown. We have just had the half term from hell with the new SATs tests.  No pressure from us, school gave all the support they could, but 4 days of sitting still in tests is hard for any Y6 student, and for a skware peg it was just hell. The week after the school had their normal assessments, and then there was a week of results before half term (Yay!!!!).

We now have a week off, and worries about the final half term at primary school have started, after 9.30 pm, of course, and I am sure they will continue until July. I can’t ignore it, as some may suggest, as he is close to meltdowns most evenings. I can’t stop the change from happening, as that is beyond my power, and he’s ready to move on. Instead, I will do my best as an SEN mum, and do whatever it takes to get him as calmly and happily through the next few weeks.

Another blog with my opinions on SATs, testing and Skware Pegs to follow very soon…….

 

Normal is whatever happens every day.  What happens in my house may be very different to what happens in your house, and that’s fine.  We have our normal, and you have yours.

However, when you live with square pegs, or when you are a square peg, little things happen, behaviours start, and you adjust accordingly.  Little quirks, oddities and things that happen every day get absorbed into day to day life, and you end up rarely going out and getting home after 10pm.  Or you realise that since your child was born you have only been away for one night – not one night at a time, but just one night.  You watch their face when you’re somewhere new for signs of stress.  You carry Calpol and a bottle of essential oil just in case the stresses start.  You miss concerts and sports matches on a regular basis because although you’re there, you are too busy avoiding meltdowns or using distraction techniques to know the score or what’s happening.  You regularly have to think of the material and colour when choosing clothes – for you and for them.  All this becomes your normal, until, one day, you realise that this is a long way from most other people’s normal, and you begin to think and slowly put the pieces of a jigsaw together.

Is it ‘normal’ (and how I hate that word, even though this post seems to be full of it) for a 10 year old to hate sleepovers, both at a friend’s and when a friend stays here? Should a ten year old retch at strong smells, and new tastes? Should a ten year old like to finger eat rather than use a knife and fork, even though they are quite capable of using said knife and fork? Poor sleep patterns? Yes.  Lots of imaginative play when little? Not really, not like our older child. Imaginative conversations? If you mean deep discussions about which Marvel and DC characters have the potential to be real, then yes.  But this is a science based conversation rather than imagination.  For example, you could be an inventor like Tony Stark (Marvel) or Batman (DC – the differentiation between the two is important), and who knows what Gamma rays could do to a person, if they survived (Bruce Banner, Marvel) and there are still undiscovered tribes in the Amazon, so Wonder Woman (DC) is possible, though unlikely…….and so the conversation went on. Only today I realised that I can’t remember them ever having a full on temper tantrum.  I can remember hysterical tears once or twice, but a full blown toddler tantrum? No, I don’t think there was one.

So, now we have a CAMHS mental health worker.  We have already filled out a form for ASD (autism spectrum disorder), and school also have 3 copies.  Our next appointment will be when the forms are all back and analysed.  If they show ASD traits, then we are referred for a formal diagnosis.  If not, then I presume there will be more forms and more traits, syndromes and disorders to be screened for.

However, whatever the findings are, there is nothing ‘wrong’ with my child.  Yes, he is a Square Peg, but Square Pegs change the world – think Einstein, Newton, Jobs, Darwin, Turin and so many others.  I really hope that this journey helps him control his anxieties, and on a selfish note, I hope we get to have a bit of a ‘normal’ social life, but more than anything, I hope nothing changes within him.  I want his amazing brain to keep coming up with extraordinary ideas, I want to keep sharing his boxless view of the world and I want the amazing essence of his ‘normal’ to stay and to shine as brightly as it can, free from the shackles of his anxiety.

I feel as though I should be in confessional booth with what I’m about to type.

I am a mum to two children, who both have specific learning difficulties (dyslexia). One also has ADHD and has had anger management issues in the past, and the other has an appointment with CAMHS in a few weeks to see if the anxieties that seem to rule his life are (just) anxieties, or a symptom of autistic spectrum disorder, ADHD or something else.  I feel that you need to read those sentences in a whisper, because, surely, I must have done something wrong in pregnancy or in the way I have brought them up to have two children with moderate but significant needs.

Although, in actual fact, we have brought them up.  My husband and I are a team, and the ‘we’ also extends to close family and friends who have all been a part of the children’s lives, but I have worked part time hours since having our eldest, so I am the ‘primary carer’.  They are my life, my vocation, my career, my everything. I carried them for nine months, I grew them and gave birth to them.  I fed them for 6 months.  I made decisions about when to vaccinate.  I held them when they were ill (and they both had serious conditions when they were younger), nursed them better, cuddled them when they stank of sick. I made the choices over schools. I decided where to go on play dates, what toys to buy for Christmas and birthdays. I initiated the tests for dyslexia, for ADHD and now for whatever CAMHS brings this time.  If something was done wrong, it was done by me.

So, there you have it.  I feel guilty.  I am wracked with what ifs, why didn’t Is, why did Is and should I/could Is?

I didn’t enjoy being pregnant with either.  Is that why they have issues, because I didn’t enjoy all the time they were growing inside me? Should I have tried harder to feel the bloom?

When they were quite young, I went back to work part time.  Our eldest was left with family and our youngest at a nursery.  I went to uni when our eldest was 2, and he had to go to day nursery that he didn’t enjoy – is that why he has anger issues now?  Our youngest was in nursery 2 days a week from being just 9 months old – is that why he gets so anxious now?

Should I have eaten more/less oily fish when I was pregnant? Did I accidently eat blue cheese? Did I have a glass of wine? Did I, should I, could I…….the list of questions is endless.

Don’t get me wrong, I wouldn’t change my boys for anything.  I wouldn’t take the dyslexia away, as it makes their minds think like there is no box.  I wouldn’t take the ADHD away as it makes our eldest very practical and ‘doing’.  He likes to fiddle, to take things to bits and put them back together.  He is incredible musical and artistic, and we have yet to find a sport he cannot do. I wouldn’t even take the anxieties that seem to take over our family most evenings at 9.30 pm as they make our youngest an incredibly empathetic, caring individual, with a brain that just cannot slow down, even at bed time when all the thoughts from the day fuzz up his relaxation and take over. A brain that asks questions such as ‘Do you think infinity is a number or a time reference?’, and gets frustrated that they haven’t found a cure for cancer. ‘Why haven’t they? Why can’t they all just work together and sort it out?’.

So I wouldn’t change them, I wouldn’t do anything differently if I had my time again, but that doesn’t stop the guilt, or the worry or the what if’s. It doesn’t stop me replaying stuff I have done in the past and wonder what difference that’s made.  It doesn’t stop me lying in bed at 3am wondering what I can do now to help them now.

Baby books tell you nothing about things like this, about how to deal with the day to day problems and issues kids like mine face.  I know that compared to many parents my problems are tiny, but they are there, and they keep me awake, keep me worrying and keep me feeling guilty that I may have done something to contribute to all this.

However, we will continue to embrace and celebrate everything that they are, and keep chanting our mantra:

Why be ordinary when you can be extraordinary?

When does a child’s individuality become a problem, and when does that problem need a label? We expect children to fit a preconceived mould; we expect them to read at this level by the time they are 7, and to be able to do maths to that level by the time they are 11 (and I know that the levels are changing, but there will still be benchmarks).  We expect them to sit still for an hour or so at a time, and so produce lovely hand written pieces of work with minimal mistakes.  We expect them to be at school away from their family for at least 250 days a year, and to behave, and play nicely and to mix with all different kinds of children and teachers from all different walks of life.

If I was expected, as an adult, to sit in a room with 30 other people, on an uncomfortable chair and write about things I had no interest in, and not talk when the person in charge was talking, and then do maths, or geography or science or PSHE and have to conform and only have toilet breaks when I was told, and only go outside at allocated times, and if it was raining/icy/snowy I would have to sit inside and watch old Disney videos, I would quit and walk away.  I am an outdoor, doing person.  I am not a sit still office person, and so my jobs since leaving school have reflected this.  I think if I had to go back to school now I would be waiting at the head teacher’s office more than I would be in the classroom.

My children are not sit still types.  They are outdoor exploring, or indoors wrecking the sofa to build a den children.  They find having to do an hours’ writing a chore; my eldest is revising for exams at the moment, and making him sit for an hour to revise or complete coursework is tough on me and him.  When we leave school, we can choose jobs or careers that suit our personalities. Although parents have a degree of choice in the school they send their children to, the education system is still, more or less, sitting and learning.  Dynamic, inspiring teachers do make an amazing difference, but there are still tests and exams to be taken and a curriculum to be followed.

So, do my vibrant individuals have a problem? And does that problem need a label? No and yes, would be my answer.  No they don’t have a problem or a disease.  Being ‘diagnosed’ with a learning barrier automatically makes it sound that there’s something wrong with them.  My children have amazing brains that don’t just think outside the box, they think like there is no box! They can see and feel things that I never notice.  They come up with ideas (and counter-arguments) that just blow me away.  They are incredible empathetic.  They have conversations and understandings that are well beyond their years. They are two of the most intelligent people I know, and yet if you give them a pen and ask them to write their ideas down, everything seems to fall apart and crumble.

My vibrant individuals do not have a problem.  Instead they have a huge advantage when it comes to thinking, reasoning and understanding.  It is education that has a problem trying to get the best out of them.  It is our problem, not theirs.

Do they need a label? If you asked me this a few years ago I would have screamed ‘No!’, but now I think they do need a label so that people can understand.  But alongside labels, they need people to understand what those labels mean.  Dyslexia does not mean stupid, it means amazing minds that articulate verbally rather than on paper.  ADHD does not mean naughty, it means they need to be doing and touching and seeing rather than using all their energy and concentration to sit still.  ASD does not mean odd or eccentric, it means enhanced perceptions.  ODD does not mean everything you say will be challenged, it means explain the whys behind the rules.  Learn to compromise with each other.

I think we need to adjust the education system to take into account the amazing variation that is in our society.  Tolerance, understanding and acceptance of who we all are needs to happen from age 3.

Einstein would have ‘failed’ his KS1 SATS – and his is one of the most amazing brains that there has ever been.

At what point does helping a children with any kind of barrier make it worse than not helping at all? A 10 year old I know has dyslexia.  Verbally, he’s near the top of the class, but as soon as he picks up a pen it all falls to pieces.  His reading isn’t too bad, but writing and spelling are a horrendous task that even with an enormous amount of effort, bring very little success when compared with his peers.

Soon the whole school is taking part in a sponsored spell to raise money for a local charity. The thought of having to spell unknown words, and his presumed low score bringing in less money than his peers caused sleepless nights and tears.

His parents were in a dilemma. Should they ask school to excuse him from the task? This would stop the worry over the spellings, but it would make him different to his peers and would he be able to raise any money?

Should he be given an alternative list of words? Again, this would make him different and may reinforce his perception of his barriers to learning.

His parents chose a third way – getting him to participate in the sponsored spell with the same words as his peers.  All sponsors would be a fixed amount rather than per word, so the pressure to have to do well to raise money was lifted.  They also spoke to him about how many he thought he would spell right.  He said about a ¼. They gave him a target of spelling ½ correctly and the other half phonetically, more if he could but whatever he managed they would be proud of him for giving it a go and facing his fears.

Did they do the right thing? Is it right for schools to have sponsored spells and other tests that may highlight differences, but may also give students the chance to succeed and shine?

Barriers to learning can make students feel different.  Do we need to stop them feeling different, or to make them embrace the unique, amazing person they are? Should we be celebrating the differences rather than making them feel they have to conform to reaching level 4, for example, at age 11 (and yes, I know the new primary curriculum has got rid of the levels!!)?

Please leave any comments or questions and I will do my best to answer and respond.

There is something fundamentally wrong with the education system (NOT teachers, lecturers or TAs, we all do the very best we can with what we have). The majority of AP kids that I teach have ADHD, dyslexia and other barriers to learning. They have been completely let down by the system, and by the time we get them at 14 or 15 they see themselves as failures and unable to learn. Many of them then go down a route of self destruction (drugs, thieving, drinking) and they can’t see the way back.

Hi!

I have worked in further education (as a qualified teacher) for the last 14 years. I also have 2 boys who have SENs (Special Educational Needs) and although are both above average intelligence, with the Ed Psych report to prove it, they both find formal education very hard, mentally, physically (they can’t sit still for very long) and emotionally.

I have come to the conclusion that the education system only caters for the round pegs to fit in their round holes.  This is not a dig at teachers, TAs or any of the wonderful people who work in education.  We all do what we can with the time and resources we have.

I believe that the educational reforms just make it harder and harder for the square pegs to fit.  For the past two years, I have taught alternative provision 14-16 year olds. These are the kids who have been permanently excluded for many different reasons.  They may have SENs, troubled home lives, anger management issues, or may just be ‘difficult’. Each one I have spoken to me told a different variation of the same story.  They hated school. They hated the way school made them feel. They felt like outsiders or failures. By the time we got them at Y9, 10 or 11 they were disillusioned and fed up with the whole system.  They felt they were on the scrap heap of life, they were failures.  We did have some successes, some that we managed to switch the light bulb back on, but others slipped through our fingers.

Skware Peg Rownd Hole is not just for children with SENs, not just for their parents, but is for anyone who feels a bit different, like they’re not quite the person society expects them to be.

We are all unique.  We are all amazing.  We all have the ability to sparkle and shine.

I hope these blogs will make you think, make you smile, make you realise there is no such thing as normal.

I hope you will comment, make suggestions, give me ideas for new posts.

If you have read a good book or article, please share it with me – I have plenty of books on my bookshelves I am planning to review over the next few months, and am happy to add to the list.  If you would like to write a guest blog, please get in touch.

My idea for this is that we will build a supportive community where we can forget fitting into the round holes, and all embrace our individuality and who we are, and who we are truly meant to be.

Enjoy!!