Our Easter holidays have started (well, they are on holiday, I don’t finish ’til tomorrow afternoon) and not a moment too soon. This has felt like a long, roller-coaster term, started and finished with talk of CAMHS. We have had amazingly good weeks, fantastic academic results, an increased friendship circle and lots & lots of rugby. On the surface, things seem to be going really, really well.

Dig a little beneath the surface (or look closely at the bags under my eyes) and you will see it’s a fragile balance that often falters. We have had highs as well as lows, but there has been lots and lots of angst over various things, happenings and peers, so our trip to CAMHS at the end of the term was our light at the end of the tunnel.

By chance, and luck, we were allocated the same case worker as last time. As we were classed as new patients again, we had to fill out forms (patient and parent ones) which we did, with some rather unusual answers from him. We went in for our appointment/consultation with our case worker, and it was one of the most surreal hours of my life so far. Our son answered as only he can – direct, to the point and with an air of contempt when he thought that the question was stupid. He also took his shoe off, swivelled round on his chair (which wasn’t a swivel chair), poked fingers in holes, and by the time we had finished, he was definitely ready for home. The outcome of the meeting sounded hopeful. He would be discussed at the next case meeting to see what had to happen next, but it may include how to get a second opinion for an ASD assessment. I would have a phone call in a week to discuss the outcome of the meeting.

My phone call came, and it wasn’t what I had hoped for. No ASD re-assessment as it is only 6 months from the last one, but some of his anxieties are of a clinical level which means he can have group therapy (which seems to be a strange thing to offer a child with social anxiety), or 1-2-1 sessions, which is what we have chosen. I was so disappointed and upset that we weren’t getting the assessment that we feel he needs that I dismissed what we were being offered.  I asked about other routes to second opinions, and that afternoon I phoned our GP asking for an appointment to start the second opinion route. I was in Warrior-Mum mode, and I was out to right wrongs and get things sorted.

That night I couldn’t sleep with every scenario running through my head. I had an internal monologue that was full of every what-if, if-only and why-not I could think of. It was quite a dark place, but somewhere I think all parents of SEND children go to every once in a while.

Once I got myself out of my dark place, I decided that whether or not he is as far along the spectrum as we need him to be for a diagnosis is irrelevant right now. He has crippling anxieties that stop him doing everything he would like to do. He finds staying away from home very difficult, he worries about making new friends, he finds social situations hard. All these will be helped by his 1-2-1 sessions. I have probably slept on his floor for 1/5th of nights since December. This, too, should be helped by the 1-2-1 sessions, as will food anxiety, going to new places, new people starting at school, starting a new school year in September (this might feel a long way away to some, but there is only one term left in year 7, which means, at the moment, there is only half a term til the year 8 anxieties start).

I feel that, sometimes, parenting square pegs means that you are always ready for a battle. You expect things to go a little awry, you wait for phone calls and emails, and when you don’t get the answer or solution you want, you panic, get mad and go into battle mode. Or at least that’s what I do. I’ve battled and fought for my children for the last 20 years, since we had to ask lots of questions about hospital visits and tests.  I also battle for the people I teach, wanting them to have access to the help they are entitled to. When you reach a dead end, or a ‘No’ or a ‘That can’t be done’ you don’t accept and walk away; you challenge, you push and you prove them wrong (whoever ‘they’ may be).

This time, however, I paused and thought about the hand we had been dealt. And you know what? I think this is the best direction at the moment. Whether or not he has ASD rather than ASD traits is irrelevant right now. What matters is that he starts to control the anxieties, the panic and the stress. What matters is that we can start to live a ‘normal’ life a little more. We can go to new places without panics. We could have a summer holiday that doesn’t have week by week (or even day by day) planning that is in place before they have broken up. We could help him to smile a little more, and scowl a little less. Before I battle the ASD diagnosis battle, I need to put his current needs above everything else, and trust that this is the right decision, and right direction for us to go in right now, and maybe I can learn a little from the sessions too.

I have often said, as a teacher and as a parent, that I want my students to do well despite having *insert hidden disability here*. Please, don’t misunderstand me, I want them to work to the best of their abilities and fulfil their potential. I want them all to be successful, but recent events have made me question the word ‘despite’.  It is used too many times in education as a subconscious excuse to limit differentiation, to make all students have to fit the round hole. I don’t think this is a conscious thing – it certainly hasn’t been when I have done it. But it needs to stop.

We expect a child to sit still and not fiddle despite having ADHD, when actually they have an amazing brain that is wired for movement and doing rather than sitting and listening. We tell the gifted student they need retake their test and learn the spellings and do well despite having dyslexia, when actually they have a brain that could find a cure for cancer, or discover a lost world but their brain can’t process how to spell Pythagoras.

Hidden disabilities are easy to overlook, to think that we can mould these amazing square pegs into the preferred round holes. However, would we expect a child in a wheelchair to keep trying to run 100m depsite their disability? Of course not. What about the child who is visually impaired – do they need to try harder to see? No, absolutely not. So why make our SEND children do this?

It is the 21st Century. It is time for change. It is time to embrace what our children are good at, to boost their mental health, to stop trying to make them into round pegs, and let them shine like the amazing dodecahedrons they are!

So, last week we had parents’ evening. It was fab. Every teacher had good things to say about effort, behaviour and grades. There were a few comments about spelling and presentation (which is to be expected with dyslexia), but EVERY teacher had good, positive things to say about him, and he is doing really well, even in art (not a subject he has particularly enjoyed before). Therefore everything must be going really well.

Er, no. Everything is going really well for most of the time, but good grades do not necessarily equal good mental health. Good grades equal a smart kid who works hard, sets high standards for himself and works to achieve those standards.

Just 5 days after the praise of parents’ evening, we had the first morning meltdown for weeks. As I walked upstairs with breakfast (no comments about out morning routine and breakfast in bed, please. It works for us and that’s all that matters) I could see his light was on and he was sitting up in bed. I greeted him with my usual ‘Good morning, how are  you?’. His reply was to blink his tear filled eyes at me and shrug his shoulders. Not a great start to a new week. I asked what was wrong, and, again, he shrugged his shoulders. And then he told me he couldn’t go in; couldn’t face another day; he needed a day off. We have had a busy weekend, but we have alternated busy episodes with longer spells of vegging out watching TV (back to back episodes of The Flash as he discovered the series last week, so he has 3 series to catch up on). It’s not as though he’s had no down time since school finished on Friday.

We chatted, he leaned on me, he sighed a lot (A LOT) and then he slowly got dressed and went to school. There have been no ‘rescue me’ texts, nor ‘hey, it’s not been that bad’ texts either. After school rugby club means I won’t know how he’s got on or how his mood is until he gets home at 5.40, so we wait and we hope that this morning was just a blip. We’re nearly at the Easter hols, and sometimes that last push is the hardest. We’re also back at CAMHS on Friday, so that may be playing on his mind too.

So, to come full circle and back to where I started this strange ramble, OK does not mean OK. OK with grades and success with school work does not mean that life is good. And also, bad school grades does not mean everything is going wrong. We need to look at everything in our children’s lives, regardless of whether they are square pegs or not. There will always be highs and lows, and we need to give them the tools to deal with these, but to assess whether they really are OK, we need to look beneath the grades and see what’s underneath.

The clouds have parted as quickly as they arrived. After excellent support from school, lots of talking things through at home, the anxieties and the moods have lifted, for now at least.

The thing that people don’t tend to realise (unless they either have anxiety or live with some with anxiety) is that there is no logic about when the anxieties will hit, or what will trigger them.  HUGE things can be a walk in the park, and yet catching an earlier train or the shops running out of a type of cheese can be the biggest thing to overcome.

What can we do to help? Whatever has caused the anxiety needs to be acknowledged, even if, as an onlooker, you think it has been blown out of all proportion. Don’t say you understand, because you probably don’t, so instead say you’re there, you’re listening and ask if there is anything you can do. It may be a hug, it may be to leave them alone for a little while; but if you do leave them alone, keep checking on them, and keep letting them know you’re there if they need you.

Give them time, space and reassurance that they’re not on their own. Listen without judging, but really listen, not just nodding in the right place. And let them know that their normal is ok, even it’s a different normal to yours.

 

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.