There haven’t been any updates for a few weeks because we have had calmness, smiles, singing, laughter and it’s been amazing. We’ve had our boy back. We thought we had cracked it (for now) and I was actually a little worried we would have very little to report to CAMHS when we go back at the end of March.

But then, on Sunday evening, the happy bubble cracked, the dark clouds gathered and the anxiety came back. The mood changed, the frown and the sad face returned and I laughed at my naivety thinking we’d got it sorted.

When his dark clouds return, mine do too. It’s so hard to stay happy and upbeat when you can see your baby struggling with something that is way to big for a 12 year old to have to deal with. And a big problem with anxieties is that there is not necessarily any logic to them; some big things can be shrugged off, and yet a tiny thing gets under your skin, opens the flood gates and all the worries and anxieties come rushing back. As an aside, it’s interesting how seeing his anxieties has made me recognise my own. We’re definitely on this journey together.

So, about 26 hours after the gate was opened and the darkness came back we had a chat, and for the first time, he told me what he thought might be worrying him. There is a new boy starting at school after half term. He seems nice enough, but he’s ‘stereotypical’. I asked what he meant by this. Stereotypical sporty kid, science kid or…? He was a stereotypical boy. He liked football. He liked normal things. He wasn’t like my son. When I asked if this mattered (and this broke me last night), he said it kind of did, because he was in a minority, and if another stereotypical boy joined the year, he would be even more in a minority. He would feel even more different. Does he want to change? No. Does he have nice friends now? Yes. But he feels different, and if there is someone new who’s not like him, then this is someone else for him to feel different from. He’s also worried that now he’s just about enjoying school and going in happy and enthusiastic, his fragile status quo could be disrupted.

My heart is breaking right now. I want a magic wand and a crystal ball. I want to tell him it’s all going to be OK and to stop worrying, but I can’t. I can’t promise this new boy (who I’m sure is very nice) won’t make things change and alter the dynamics of the year. He might not, but he might. They are all full of pre-teen hormones. A new pecking order will need to be decided, new friendships made.

I’ve emailed his teacher and she has been fantastic (as usual), and will keep an eye on things. I have told him what I’ve done and he has gone in a little happier this morning. I think we have closed the flood gates, for now, and hopefully his anxieties will be unfounded and the new boy will be a little quirky, and will fit in. If not, we will rally round him, and help him to find the coping mechanisms needed to deal with whatever happens next……

First of all, I need to tell you that I have two amazing boys that fill my life with an immeasurable amount of happiness and joy. They are the most gifted and talented people I have ever met (and no, I don’t think I’m biased at all!!). But they both have learning barriers, have both been to CAMHS (and we will be back there again, more details later) and parenting children with SENDs can be so hard sometimes.

I also know that we have it easy compared to many families out there. My husband and I are a team when it comes to parenting. I am more hands on as I only work part time, but we are a united front and we support each other through the good & the bad. The boys’ problems are tiny compared to the problems that some children face, & I know and am grateful for that too. But it is wearing, and sometimes the never ending battles, problems and issues that are part of every day get a bit too much.

Today is one of those days.

Nothing in particular has happened. We’ve had much ‘worse’ days that haven’t seemed as hard. But today a combination of sleep deprivation, slightly disappointing assignment marks and a wobbly tooth has sent me close to the edge. And that’s the point of this post, really, apart for me to have a rant and get things off my chest, to tell other parents, whether they are SEND parents or not, that sometimes that bad days come out of nowhere and are bad for no specific reason.

My sleep deprivation is the main problem today. I am just so tired. Our youngest started year 7 in September and his anxieties and bed time mini-meltdowns started in August before we had been discharged from CAMHS. We are now over half way through January and I have spent 10 out of the last 12 days sleeping on his floor as the anxiety of going back to school after the Christmas break grew and didn’t go back down.  After speaking to the school SENCo, we went back to the GP and are being referred back to CAMHS for re-evaluation of ASD, and hopefully help for anxieties.  That’s fantastic, but I would rather have a magic wand, a crystal ball and a book of solutions!

The final straw was a wobbly tooth. Not a big deal for most 12 year olds, but a fear of blood means that wobbly teeth are a HUGE source of anxiety. When you get a very worried ‘Mum!’ shouted at you before 7.30 am, you know it’s not going to be good. I don’t think the tooth will be out for a few days at least, which means the anxiety is here for a few days too.

He thought I was a bad parent this morning as I sent him to school with said wobbly tooth. I don’t think he was too impressed when I wouldn’t pick him up at lunchtime unless the school nurse phoned and asked me to, plus I wouldn’t ask his form teacher to send him home this afternoon. But he’s home now, the school day is done and the tooth is still wobbling. It’s Friday evening so the anxiety has dropped a little, but it’s going to be a balancing act between recognising this anxiety and not letting it grow, and still having a normal weekend, doing normal activities and getting all the homework done for Monday.  I think I know where I’m going to be sleeping tonight too.

BUT, time to stop moping and focus on the positives.  It’s Friday. School and work are done for the week, and there are two days to relax and ignore wobbly teeth and stressful school and college stuff. No rain is forecast which means we can get out and about, we can watch & play rugby and we can turn off the alarms. And we will laugh and smile and be happy!

 

A recent post on Facebook got my attention. It was from a SENCo who wanted to know what advice parents of SEND children would like to give in preparation for a training session she was going to give her colleagues. My reply got a few likes, so I thought I would expand it on here. As I also teach, it is, in many ways, an aide memoir to myself as I sometimes forget the advice I give as a parent when I am teaching a SEND student, or any student with any kind of barrier, or indeed any student.

Here goes……

Dear teacher/tutor/lecturer,

As I am sure you are aware, my child has a few ‘issues’ that are documented at school, and the details will have been passed on to you. However, at school, my child wears a ‘mask’ that stops you seeing the real him. To really get to know him, you need to try and see what’s going on behind the mask. You also need to realise that the mask means he’s not OK. The mask means that he’s feeling under pressure or stressed, and he won’t be working to the best of his abilities. No reaction is not a positive reaction. Saying he’s fine, OK, or meh, is not a positive reaction. It means he is just about holding on, just about managing. It doesn’t mean things are good. It doesn’t really mean things are OK. It means that there is an inner struggle to stay calm, to breathe and to do what he needs to do.

I have no doubt that because his meltdowns are saved for home, and that because he is such a good pupil when he is wearing his mask that you think he’s doing well. He’s learning, he’s hitting targets. Quite often he’s exceeding targets, and when he doesn’t you just tell him not to worry, and you put it down to one of those things rather than finding out why. Academically he is doing well and we are very pleased with his academic progress. However, inside he’s not doing very well. Inside he’s barely treading water, and now the school has broken up for Christmas and he can let his mask slip, we are dealing with a term of internalising the struggle. We are lying with him while he goes to sleep. We are giving low dose Calpol when the headache gets too much. We are trying to persuade him to relax and and enjoy the holidays rather than worry about how little time is left compared to the huge expanse that is next term.

When term does start again, I need you to remember that being ‘fine’ doesn’t mean that he is fine. I need you to realise that smiles, interaction, laughter and seeing the boy behind the mask means he’s doing well.  I need you to see the spark, the wit, the sarcasm and the amazing mind. Do whatever you need to do to try and connect with the boy behind the mask, and help him grow and develop into a self-confident adult who can sparkle & shine.

Many thanks,

Mum

Children with anxieties aren’t usually quivering in the corner of the playground. More often they will be the children on the periphery, watching more than taking part. They may be the model students in class, sitting quietly and doing as they’re told. They may seem absolutely fine while they’re at school with the routine and rules that have to be followed, but then they get home…..

Once they are at home and their coping masks can come off, they melt, and sometimes explode. All the stresses and trauma of the day that have been suppressed for 6 hours come bubbling up to the surface, and the inner turmoil becomes outer turmoil. The meltdown may be physical, with screams, tantrums and flailing arms and legs, it may be physiological with headaches, vomiting, stomach aches or other symptoms, or it may be a shutting down, where the child goes into themselves and needs time before they can talk to anyone, family member or not.

As a parent of a child who has physiological and shutting down meltdowns, I feel so helpless when this happens. I often don’t get told what is wrong, but it is blatantly clear that there is something very wrong. Our current stressors are homework and another pupil in the year. The pupil we can help with, giving him coping mechanisms, and talking to teachers to ask them to keep an eye on things, but there’s not much we can do about homework. His argument is that after a full day at school, he shouldn’t have to homework, and in many ways I agree. However, his lessons are full of diversity and differentiation. Science lessons have experiments that last most of the lesson, history and geography have debates and discussions so the homework is writing things up, and languages cover theory in lessons with homework often learning vocab.  If there wasn’t any homework, he wouldn’t enjoy the lessons as much as there would be more writing in class, but at the moment homework is a dark cloud that follows him everywhere, even when he’s away from school at the weekends.

He also has to ‘de-social’ when he gets back from any group situation. We were at a school bonfire night on Saturday, and he spent 2 hours hanging out with school friends and peers. He seemed to be having a really good time, but when we got home, he went straight upstairs into his room, and stayed there for about an hour.  I used to really worry when he did this, but now I know it’s just his coping mechanism, and after an hour, he came back downstairs and enjoyed a family evening of talking and films.

So, meltdowns don’t always have to happen when they child is in the stressful situation (be that school, cinema, shopping or whatever happens to be stressful), and instead they often happen at home, in the safe place where the child can do whatever they need to do to release stress, tension, anger or whatever other emotions may be building up.  When we were going through a difficult time with our eldest, a volunteer at work told me that only melting/exploding at home was, in a strange way, a compliment. It was the only place where he felt unconditional love and knew he was free of judgement, and so it was the only place where he felt safe enough to meltdown and explode.

I read an interesting feed on Facebook the other day. To begin with, I thought it was a parody account, but I now think it was real. The initial statement was relating to whether spanking or medication was the best option for dealing with ADHD. There then followed several comments advocating either or both, and then the inevitable ‘ADHD isn’t a real problem, it’s just an excuse for poor parenting’. I ended up commenting that our son has ADHD, and we didn’t spank or medicate, and he’s now 20 & at uni and is doing rather well.  My comments had a few likes, but I didn’t go back to see what else had been posted.

The fact that this appeared on my feed through either a health or SEN page that I follow was fine, I have lots of things like this appear. What concerned me was the ideology of that initial post, and the comments that followed.

The following are my considered points on the matter:

1. I think ADHD possibly is over diagnosed, but I don’t think this is due to poor parenting. We live in a fearful, digitalised age where children spend hours on devices and don’t get outside and move around. The media would have us believe that there is a paedophile on every corner, and our children are not safe. Much better, then, for them to disappear into a digital world where we have no idea who they are talking to???? I also think that the pressure on parents to work, bring in money and buy goods for their family means there is more time spent outside the home, and so more ready meals and convenience food is bought because it is convenient, not because the parent it lazy. In addition schools have so much pressure on them to make sure that the children can tick all the boxes at the end of each key stage, that the children that want to run around and use their hands rather than sit still and use a pen do become disruptive, and then they cause problems in class. This is not the school’s fault, but it isn’t the child’t fault either.  There is no blood test for ADHD, so it’s not black and white. The increase in ADHD diagnosis is, in my opinion, a reflection of the state of society rather than parenting or education.
2. ADHD is real. I live with a young adult with ADHD, and I am sure I have some traits myself. It isn’t made up, it isn’t bad parents and it isn’t a naughty child.
3. ADHD cannot be beaten out of a child. It is part of the child’s make up. All beating would do is repress all the feelings and anxieties and anger until they come spilling out when the child is older.
4. ADHD isn’t all bad. My son is now at uni on a course that allows him to embrace all his energy, his multi-sensory abilities and his sense of social justice. He will make an amazing teacher/coach because he sees everything (see point 5)
5. I don’t think ADHD is attention deficit, I think it is attention overload. ADHD/ADD people see and feel everything so they find it difficult to focus on one thing. They weren’t ignoring you, they had just seen a butterfly on the flower behind you so for a second they were looking at that, and now the baby in the pram has taken their hat off, and and bird has just flown over head, and the sky is a really pretty shade of blue, and where do you think that plane might be going to…….
6. There is a place for medication. We never used it, partly because our son was a teenager when he was diagnosed and he didn’t want to, and also because our parenting strategies were, on the whole, working.
7. Parenting a child with ADHD can be so tiring. I was once in a MAT team meeting for a child with ADHD and other problems, and a social worker said it was ‘just’ ADHD. I had to interject and say it’s not ‘just’. I am a teacher and a therapist, both my husband and I are on the ball when it comes to dealing with additional needs, and we struggle at times. A parent with no support and no training on how to deal with it may feel completely overwhelmed. ADHD isn’t a just.
8. On the flip side ADHD has many, many advantages, especially once formal education is done. ADHD makes you successful if you can find the thing that makes you happy. Work with it, not against it. Succeed with it not despite it.
9. Finally, there is light at the end of the tunnel. We have an amazing, articulate, social chameleon who can talk to anyone, and can charm his way into or out of most situations. It was tough at times, and there are still moments when he wobbles, but his ADHD has helped him turn into an  incredible, passionate adult who is ready to charm the world into being a much better place.

Just a quick blog today, but I think it needs to be emphasised that we are all different. I am me, you are you. Even if you are the same age, gender and height as me, we are different. Even if you have the same quals, went to the same school and even have the same birthday, we are different.

One of my children has ADHD, which means he is like my child with ADHD. He may share traits (good and bad) with another child with ADHD, but he’s different. He has his own uniqueness and that’s just how it should be.

My other child has anxieties. They affect him in different ways on different days, so he may share traits with another child with anxieties, but they are different.

Both my children have dyslexia. On a linear scale, they are both ‘severely’ affected, but the way it affects them and the way they cope with it is completely different. One can talk and charm everyone and isn’t too bad at spelling, but still struggles with reading & maths. The other is a whizz at maths, can read short excerpts and paragraphs but he cannot spell anything that isn’t phonetic, and he doesn’t like talking to people.

Too often we put people into groups, genres or tick-boxes. I don’t think we should. A one size fits all group system doesn’t work in education, the workplace or society.  We need to accept and embrace our differences. We need to see each other’s strengths and support each other’s weaknesses.  We need to accept.

 

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…….