The Next Junction

In my last blog I talked about how people step up when times get tough and how others unfortunately fall by the wayside. I love the quote from Michelle Obama “when they go low, we go high” – I call this blog the next junction as for many years I’ve had to motivate myself every day to get through the tough challenges that were faced by my son and my family.

Whether that would be going to work or heading to the next multi-disciplinary meeting and have more support withdrawn. Can you believe a senior nurse not understanding my son’s condition saying, “It’s just epilepsy”. Epilepsy so severe my son can’t do anything for himself, epilepsy that has robbed him of any sort of normal life. That nurse who looks after the care team really didn’t get the turmoil in our lives and the unknown future we have. Another senior member of that team also asked can Joey call out for help in the night… my son can’t talk by the way or communicate for help!

This is what happens when health boards change and don’t understand complex needs.

I would speak to my bosses in work who would look on in horror as the world that I was part of was so far removed from normality. I would bounce from speaking to a customer to dealing with how do I get my son the right standing frame or the right equipment for the house. I would be met with the disbelief of my work colleagues who would say I don’t know how you do this, how is this right, why does this not get provided.

I can do this because of my wife, my family and friends. My wife Ceri (Joey’s step mum) has been an absolute rock through this, seeing me go through the battles for my son and literally picking me up off the floor when things just don’t go the way they should for him. It is a world that she has entered and despite being utterly shocked by what Joey and I go through she is there every step of the way.

As a parent who has a special needs child and one whom represents a non-verbal child you become their voice and no matter what, backs against the wall you fight for their every human right. No matter what is thrown at you, you dust yourself off and go again. The energy required is something I would never have thought possible. I often use the words “they didn’t teach this in school”.

I have a smile on my face when I say this because I just didn’t realise this world existed just 7 years ago and each and every one of you who fight for your children’s needs over your own. I have so much respect for you. What I would say to those who are feeling defeated, please keep going. Take a break from some of the battles and when you muster the strength go again but please do talk about it.

Despite having limited support from the disability social team and the agencies that hide behind red tape and bureaucracy I have recently found support from Bridgend carers who genuinely care about me and my blended family and I can’t thank Davina, Karen and Joanna enough for their emotional support in the past 12 months and looking out for us as a family. They care about what my daughter is going through, what my stepson and stepdaughter are going through and also provide emotional support for me and my wife. I have had counselling over the years to deal with life’s challenges and I am proud to say that this is ok, no one should make you feel like it isn’t.

If you need support then that’s absolutely fine. It’s ok not to be ok.

Recently the grocery aid charity has kindly given myself and my wife (Joey’s wonderful step mum Ceri) a break in Newquay camping for a few days. Far removed from New York where we would love to be but to have that support for a few nights break was lovely for us to re-charge from a difficult year.  Despite the lack of recognition of what Joey’s needs are by social services and some health professionals there is a network of people out there that can help outside of these – please do remember that if you are in the same situation.

I reached out and wonderful people stepped in. I have had people climb mountains, run marathons, make blankets for raffles and other raise money through their companies charity because they want what’s best for Joey. Ty hafan the children’s hospice in Wales have also been a great support, what a wonderful place it is and staying there for one weekend a year is one of my highlights because the people there care for my son’s welfare.

My friend Markos Orphanides read my last blog and said what can I do to help – I know I’ll run an ultra-marathon to raise money for his day to day needs and he is doing it next month!  Another friend Neil said I am here to help – let me see what my company can do. I have had friends raise money for my son’s ppod and a company called gallaghers help convert his room to be more disabled friendly.

I can only thank everyone who has helped me when my back has been against a wall. Liz, Drew, Polly, my whole family, Tree of Hope, Stuart, just everybody that has helped me there are so many more names I could mention over the years. Joey, myself and my family just say thank you from the bottom of our hearts. You give us light when sometimes it can seem so dark and remember the next junction could be hugely positive.

Out of Our Comfort Zone

Sitting through a live rugby match I thought would be out of the question for Isla. But not only did she do it…she actually enjoyed it too!

We only had to come inside 10 minutes before the end as the rain had set in. Luckily, she was still keen to watch the end of the game inside.

If it wasn’t for my husband Gareth booking tickets without my knowledge I would never had agreed.  A rugby arena with lots of people, noise and stimulation is pretty hard to navigate when you have sensory processing issues. I must admit I have got into the habit of not challenging Isla (or myself) to experience new things and opt for easier options.

I knew this meant a lot for Gareth that we all could go to the rugby together. So I decided we needed to give it our best shot. I also had a backup plan that we could leave if it got too much as luckily our hotel was not far from the arena.

First thing we had to do was upgrade her earmuffs. Isla had preferred a softer variety but had come to her own conclusion that they weren’t too good at blocking out noise.

We were also fortunate that Isla had attended “holiday club” and had spent some time with her ex teacher who knows her well. Isla must have mentioned that she wasn’t looking forward to the rugby because it was boring. The teacher mentioned to me she had been trying to tell Isla that we do lots of things that she liked so maybe she needed to give it a try. This was a huge help in helping Isla adapt to the idea.

Finally there was some bribery in the form of hot chips!

To be honest I probably found it more stressful than Isla. Waiting for her to react to all the people, worrying when the rain started falling and when the cheering started. Isla did look a bit worried at first but then visibly relaxed and by the end was cheering with everyone else.

It has become so easy to take the safe option. This was a bit of a wake up call for me that we have to keep challenging Isla and get her to experience new things. I am sure some outings will not be as successful but it is always better to give it a go than not try at all.

To Halloween or not to Halloween

This has been a question that many communities are grappling with for several months.

For us, we’ve been grappling with it since the pandemic began. On one hand we want our kids to enjoy this holiday and have some normalcy in the midst of this crazy pandemic, on the other hand we want to make sure that our kids and ultimately, we as a family stay safe.

Recently, I asked our neighbors if we could compromise for Halloween. What if we all put buckets of candy at the bottom of our driveways so that our kids could still collect candy but we aren’t walking up to people’s front doors. Our neighborhood quickly agreed. I think in a time like this it takes compromise, understanding and teamwork. It doesn’t pay to have a fight with your neighbor when lives are at risk.

What pays is understanding and love between each other.

My husband and I have taken things a step further. We have decided to have one of us collect the candy for our children and then we will be sanitizing the candy once we get home. It’s crazy that we even have to think about these things but with so much unknown about this virus we would prefer to be better “safe than sorry.”

Our kids are four and have been looking forward to Halloween since last Halloween. Quinn especially is rarely caught without a costume. She often is in a minimum of 3 costumes a day and this year is especially fun because Sawyer has chosen a costume.

Over the past few years he has just matched his sister but this year we were able to give him a couple choices and he picked one. It wasn’t the exciting one that I wanted him to be but the important part is he chose it and it makes him happy. We even chose a costume to match his service dog. I don’t know if we are making the right choice but I know that we are mitigating the circumstances we are in the best way that we can.

A Successful Pick

One of the challenges of having a physically disabled child is accessibility.

Anything we plan to do we have to do additional research and planning to ensure it is going to be accessible for Annabelle.

Annabelle is old enough to understand she has cerebral palsy and as a result she has to work very hard to move and has to do regularly therapy but she isn’t old enough to understand that she has a disability and what that actually means is that sometimes she will not be able to participate in things due them not be accessible.

She has cerebral palsy but that does not define her. She is a little girl who deserves to have as many opportunities as possible and we will always go over and beyond to let her experience everything she desires.

This month it was pumpkin picking.

A muddy field full of pumpkins is probably high up on the list of fun things to do with children over the Halloween period, but it certainly isn’t accessible.

Annabelle is still pretty small for her age which means we are still able to carry her around if needed but it’s not ideal and after a while of carrying what feels like dead weight, it becomes too much to handle. You also have that risk that you may trip and fall with your child in your arms which again is far from ideal on a field full of pumpkin shaped obstacles.

With pumpkin patches come wheelbarrows, for us this was the perfect solution to getting Annabelle across the field safely and to save our arms. She thought it was fantastic and enjoyed every minute of the ride. We wheeled her across the field looking at the hundreds of pumpkins in all shapes and sizes along the way.

Once we found a perfect picking spot, we put Annabelle into her Upsee so that she could enjoy the picking experience whilst we had our hands and arms free to assist her with lifting pumpkins. We were able to bend down with her so she could pick the pumpkins she wanted and then helped her lift them into the wheelbarrow.

She was in her element. We picked as many different pumpkin varieties as we could get our hands on and she loved every minute of the experience.

There is no better feeling that watching your child participate in something that you were concern was not going to be accessible enough. It is safe to say that we will be going back next year and this may even be the start of a Halloween family tradition!

 

Happy Halloween for Children with Special Needs

The advertising and marketing around Halloween seems to ramp up to greater and greater heights every year, with major supermarkets dedicating whole isles, sometimes several of them, to their Halloween merchandise, even during the crisis that we are all enduring.

Advertising supports this with lots of TV adverts featuring ghosts, ghouls, pumpkins and spiders’ webs. Then there’s the BBC Strictly Come Dancing ‘Halloween Special’!

Halloween literally means the evening before All Hallows Day or All Saint’s Day, a day festival celebrated on the 1st November each year. The name Halloween is a shortened version of All Hallows’ Evening which is celebrated on 31st October. The origin and meaning of the festival of Halloween is derived from ancient Celtic harvest rituals, but today Halloween is a time of the year that many children really look forward to; a time for fantasy and fun, a time for dressing up and scary stories, a time for ‘trick or treat’ adventures and lots of sweets!

But while Halloween is a fun time of year for many children, it can be a really difficult time for some, including many children with additional/special needs. For them it can be a confusing, anxiety inducing, or even utterly terrifying time. But it doesn’t have to be like that; if we stop for a moment to think about the things they might find hard and how to put things in place to help them, they can safely join in the fun too.

So, what are some of the things about Halloween that children with additional needs can find hard:

Stranger Danger?

We tell children all year not to talk to strangers, then on one night it’s suddenly fine to go around knocking on strangers’ doors. This can be hugely difficult for some Autistic children, for example, who are often very literal in their understanding and can be very confused by this. Why is it OK to speak to strangers today but it wasn’t yesterday? What has changed? What will the rules be tomorrow? Why? Then throw a global pandemic into the mix with all of the rules about social distancing and visiting other houses and the whole thing descends into chaos.

Fake or Real?

The more garish dressing up can be genuinely terrifying for a child that struggles to tell the difference between fake and real. Increasingly, we’re seeing dressing up outfits becoming more realistic with fake gore and movie quality makeup that makes people look truly terrifying. When that line is crossed for a child that believes that the person really has hideous injuries or has been turned into something evil, theirs is the terror that is real. Cue massive meltdowns, sleepless nights, and recurring anxiety.

I’m Scared Enough Already!

Talking about anxiety, some children with ongoing anxiety issues can find the whole business of going out ‘trick or treating’ very upsetting. Surprises, scares, people jumping out, can all be terrifying. If it’s hard to deal with the day-to-day anxiety that they face about going out on a regular day, ramp this up multiple times when Halloween is involved!

What About Me?

Then there are the kids with additional needs or disabilities that don’t get invited to the parties or to go out ‘trick or treating’ because they are viewed as ‘different’ (usually by other parents rather than the other children). Here’s yet another opportunity for them to feel left out, rejected and uninvited because they haven’t been included… again.

Parent Problems!

It’s not just the kids. Parents of children with e.g. ADHD may not enjoy their children being given loads of sugary, colourful, sweets when they are up all night with a hyperactive sugar fueled child!

There are loads of other reasons beside these, but there are also many ways to make Halloween easier for children with additional or special needs, and their families, so that they can join in too… Here’s a few ideas:

Helpful Halloween Hints

Prepare them in advance, giving them a visual timetable of what is going to happen, how and when.

‘Prime’ some friendly neighbours who are known to your child and that you can visit safely with your child knowing that they won’t do anything too scary or surprising. Encourage them to help keep to the COVID rules (whatever they are at that point!)

Provide ear defenders for your child so that any unexpected noises, fireworks etc. are less of a problem.

Choose less gory and blood-soaked outfits. It’s more about the dressing up than who can look the most terrifying and there are plenty of options to choose from.

With this in mind, maybe host an alternative ‘light party’, a counter-cultural celebration of things that are bright, light, colourful and good. Loads more variety with the dressing up, just as much fun, and no scares! If actual in-house parties aren’t allowed, organize an online version for your children to join in with.

Choose sugar free sweets, or better yet try some healthier snacks themed around Halloween (satsumas as ‘mini pumpkins’ for example).

If you are hosting a party (in-house if they are allowed, online if not), think about who might be left out and make sure you remember to invite them.

Have fun but keep checking on how your child is feeling. If they are struggling, have something that they love doing ready at home, so that you can easily return to that and help them have fun in a different way (carving pumpkins – they don’t have to be scary, making pumpkin mini-pies, decorating a jar to put a battery night-light in, apple bobbing, toasting marshmallows…)

I hope that Halloween is a great success for you all this year, in spite of the restrictions, especially for those of you with children with additional or special needs!

An Inclusive Halloween

Creating celebrations that include everyone really isn’t that hard. I have 3 children, all different ages and all different development stages. Creating fun experiences for them all to enjoy on different levels takes a bit of planning but is totally doable. Here are some of our adaptable Halloween ideas:

Baking

All 3 of mine love baking. It encourages turn taking and waiting, mixing and maths with the weighing.

Each child can take on a bit that is accessible to them. The girls can pour ingredients in easier than Ethan so he enjoys doing to mixing, especially with the electric whisk. We are awaiting his new switch adaptor which means he can also turn the appliance on aswell.

Sensory play

I have 2 that love to get messy and one wh sti isn’t sure. So we do a mixture of wet and dry sensory play. Halloween play ideas which are particularly good are dry bow tie pasta shapes to pretend they are bat’s, you can also colour with paint or food colouring, slime or jelly for a really messy time, adding in eyeballs or bugs, coloured cooked spaghetti or black glittery playdough.

Scavenger hunt

We are going to do a Halloween themed scavenger hunt around our garden and driveway finding Halloween themed pictures. For them all I will have a little check list to cross off when then find them. For Ethan I will print of extra picture cards and he can, with help, place one of them onto the grid. He can also use the small pictures to help him find the bigger pictures.

Disco

We will pop some music on, dim the lights, grab some glow sticks and dance to some spooky songs. You could even make shadow shapes on the wall using a torch.

Pumpkins

Carving the pumpkin is such a great sensory experience. Getting hands in to scoop out and feel the seeds and guts is great for hand skills. Smelling the pumpkin is also great for the senses. Little to no pen control can also be used to colour over a stencil which won’t need any cutting out.

’Tis the Season to be Anxious

It’s almost that time of year. The time of year that most of us either love or hate.

If you’re a summer person who loves nothing more than basking in the warm summer sunshine or enjoying late night barbecues and beer garden antics then now is the time for you to pop into hibernation for the next few months  If you’re a winter person then you’ll probably already be counting down the days until the nights draw in earlier, ready to the enjoy all the seasonal fun that winter has to offer. Halloween, bonfire night and of course (is it too early to say?) Christmas.

Then there is a whole different group of people who don’t just wish they could hibernate around this time, they wish they could wrap themselves and their whole family safely into a germ-free bubble whilst still being able to enjoy all the wonderful things this time of year has in store. They are filled with anxiety and dread about what the coming months will bring for them. That group of people are parents of children who are medically very vulnerable.

The reality is this time of year can be the difference between life or death.

It may sound extreme but so many medically complex children are lost to illness or infection around this time of year because their already compromised immune systems are simply too poorly to fight them off. It’s a grim and terrifying thought. This inevitably brings so much stress and anxiety to so many families who will do everything in their power to keep their children healthy.

It’s difficult to find a balance between keeping your child wrapped in cotton wool to ensure their safety that results in them missing out on so much fun that this time of year brings or living your life with your child as close to normal as you possibly can which brings with it a risk of frequent hospitalisations and a need for regular breathing intervention.

I wish I had the answers, of course we all know our own children better than anybody else so nobody can tell you what is best for your family and your circumstances more than you already know yourself. We know their limitations and we know what poses the greatest risk to their fragile health.

Our last two winters have been incredibly tough. The first winter Jaxon was just six weeks old and spent six weeks in hospital from November until January. His first Christmas, his first new year, it was all celebrated from the confines of a hospital cubicle. It was difficult but we tried our hardest to make the best of a bad situation. Last Christmas was marginally better however the lead up to it was somewhat difficult. He had five separate hospital admissions between October and January. He was admitted to hospital the day before Christmas Eve and was discharged on Christmas Day early in the afternoon. So I think it’s quite understandable that I’m less than excited about what this year will bring, especially given the current climate we are all finding ourselves living in.

I ask myself whether the current restrictions we are all living under will lead to a better outcome for Jaxon and all the children like him. Or will the fact he’s been so heavily shielded for over half the year have negatively impacted on his already compromised immune system.

Only time will tell.

What I do know is that whilst I’ll do whatever it takes to keep Jaxon as healthy, safe and well as I possibly can, he’s already missed out on so much and I desperately want to rectify that. I just hope that even if we can’t avoid a virus causing him issues, he will still get to spend less time inside a hospital and more time in his own surroundings. He deserves to enjoy the magic of winter and I’m cautiously optimistic that this year, despite everything going on, might be our best one yet. After all they do say third time lucky.

Learning About Our Mystery Senses In National Sensory Processing Awareness Month

It’s National Sensory Processing Awareness Month, so let’s take this opportunity to find out more about our many senses!

We all have lots of senses; five that we all know about, sight, hearing, smell, taste and touch, as well as at least three ‘mystery’ senses that we might not know so much about at all; vestibular (balance and movement), proprioception (body awareness), and interoception (awareness of what’s happening inside the body). This blog post explores these three ‘mystery’ senses in a bit more detail and provides us with practical ways to learn about them with our own children!

Vestibular

One of our senses is our ‘vestibular’ sense, or our sense of balance and movement. It helps us to know what way up we are, whether we are moving or still, how to experience gravity, how to maintain a position without falling. Each of us has vestibular organs situated deep within our ears and when we move our heads the fluid in these organs moves too, providing us with information about the position of our heads and bodies.

Our vestibular sense works alongside many of our other senses including proprioception (see below), sight, hearing etc. to help us feel more confident about moving in, and interacting with, our environment.

Some people can have under responsive (hyposensitive), or overly responsive (hypersensitive), vestibular systems which can mean, for example, that they either need to move constantly to get the sensory input they need or can be fearful of movement as they feel unbalanced and might fall.

A child or young person with an under responsive vestibular system might constantly fidget, rock in their chair, or need to spin, hang upside down, or move around rather than sitting still. A child with an overly responsive vestibular system might be unwilling to take part in physical games or to climb, or be wrongly labelled as ‘lazy’. They are also more likely to get travel sick.

Understanding these aspects of our vestibular system can help us to understand and accommodate the needs of a child or young person with an under or overly responsive vestibular system, allowing us to put strategies in place to support them. For example, a child with an under responsive vestibular system might find it easier to sit (and rock/bounce) on a wobble cushion or exercise ball rather than on a chair, or to stand on a balance board, while a child with an overly responsive vestibular system might prefer to sit still and be the referee or scorer in a hectic physical game.

Proprioception

Another of our senses is our ‘proprioceptive’ sense, or our sense or ‘awareness’ of our body’s position in our environment or space. It is the way that our muscles and joints send messages to our brains to help us understand about our bodies positioning, movement, coordination etc. It helps us to focus our movement appropriately, for example knowing that we need to apply more force when lifting a box of paper than we do when picking up a single sheet. It helps us know where our nose is if we try to touch it even with our eyes closed!

Our proprioceptive sense works alongside many of our other senses including vestibular (see above), sight, touch etc. to help us feel more confident about moving in, and interacting with, our environment. Whenever we go upstairs, carry something, stand up, sit down, bend over or stretch, we are using our proprioceptive system.

A correctly functioning proprioceptive system allows a child or young person to, for example, write with a pencil without breaking it, or to play in a coordinated and balanced way, not being too rough or too gentle.

If a child or young person’s proprioceptive system isn’t functioning as it should, they may seek additional input to their muscles and joints to help them to regulate themselves, or may actively avoid this. Proprioceptive seeking behaviours might be through rough play, or through jumping, stamping or even running into walls. It might also include kicking, biting or hitting out at others, chewing non-food items etc. Proprioceptive avoiding behaviours might include avoiding physical activities like running, jumping or climbing, preferring sitting still, avoiding touch, and being a picky eater. Even though these two groups of children might seem total opposites, they both need proprioceptive input to help them either calm or ‘wake up’ their system.

Understanding these aspects of our proprioceptive system can help us to understand and accommodate the needs of a child or young person with an unbalanced proprioceptive system, allowing us to put strategies in place to support them. For example, providing a range of physical activities that meet their needs such as through movement, applying pressure, stretches, walks, or even just some playdough to squeeze, can make a big difference.

Interoception

One of our senses is our ‘interoceptive’ sense, or our sense of internal ‘feelings’. Receptors in our muscles and joints tell us where our body parts are, that’s the basis for our proprioceptive sense (see above). Interoception is a similar concept; just as there are receptors in our muscles and joints there are also receptors inside our organs, including our skin. These receptors send information about the inside of our body to our brain.

This information helps the brain to regulate our vital functions such as body temperature, hunger, thirst, digestion and heart rate. Interoception helps us to understand and feel what’s going on inside our bodies; for example we need to know if our heart is beating fast or if we need to breathe more deeply, and we are able to tell if we need to go to the toilet, or if we are hungry, full, hot, cold, thirsty, nauseated, itchy or ticklish.

If a child or young person’s interoceptive system isn’t functioning as it should, they may be unaware that they need the toilet until it is too late, or may keep eating beyond the point of being full. They may be putting their coat on when everyone else is sweltering, or be wandering around in a t-shirt in the middle of winter.

There is some correlation between our interoceptive sense and our emotions too… how we ‘feel’ is more than just about our physical state. We have sometimes unexplainable feelings about places, or people, or certain situations, that can be positive or negative; it is possible that these feeling are linked to our interoceptive system too. For example, when we experience danger, our heart rate increases, our breathing shallows, our muscles tense; not recognizing these changes may cause us not to be fearful, putting us in greater risk of harm.

Helping children and young people to regulate their interoceptive system might be as simple as reminding them to visit the toilet, or helping them to manage how much they eat or drink, or checking that they are dressed appropriately. But it might also be being sensitive to how they respond to people, places, and situations; sharpening our own awareness of these things so that we can support them better.

So, I hope you’ve found it interesting to explore our three ‘mystery’ senses during National Sensory Processing Awareness Month, understanding them, yourself, and your children better!

Tic Disorders and Tourette’s Syndrome Awareness

This is new territory for us, well I thought so until we had our referral back to the hospital.  When we finally had our first video call appointment in this new look COVID-19 world of ours, the Dr quickly referred to previous notes and documents about me raising “tics” historically.  He had not seen Cameron since he was 8 and now 12 in his new high school setting the Dr said he was not surprised to see us referred back.

So up until late July there wasn’t any obvious concern, we were doing our daily home-schooling whilst I was juggling working from home and all was ok and normal, well as it could be.  We then went away for a staycation to Cornwall and whilst in close quarters of a caravan and no WIFI; which meant we spent a lot of family time together, started to notice that Cameron was doing like a head jolt –  a flicker of the neck and a grimace of the jaw.

It was a couple of days into the holiday and my husband noticed and asked me had I also picked up on this new activity.  I had but we reassured each other that it was probably just the new setting, coming away from home after being cooped up since March.  Any excuse really that would try and out that anxiousness at bay, whilst I then couldn’t sleep and turned to Google for answers – yes, I know, we all know this is the worst thing to do.

I was suddenly convinced that Cameron had some form or early onset Tourette’s.

I mean for years he use to have “vocal” tics in the style of train horns; yep you read that right, a train horn for every occasion weather he be worried or excited – he had a train horn noise for just that.  Fast-forward to the Drs appointment and was reminded of this by the Dr, you see I don’t remember when that actually stopped.  Just when we though that was it and this noise was here to stay – it would change, as many things with ASD.

So the Dr is telling me that Cameron has what appears to be a Tic Disorder.

Now Google tells me: Tic Disorders are defined in the diagnostic and statistical manual of mental disorders (DSM) based on type (motor or phonic) and also the duration of the tics (sudden, rapid, nonrhythmic movements).

The Dr proceeded to explain that Tourettes is more well known, but because of the severity of people we see on TV that are at the extreme end of the scale and involuntary swear.  That’s like ASD though, Tourette’s is also a scaled spectrum and basically its Tourette’s when people have a combination of both the motor and vocal tics.  That these have started well before the age of 18; typically, between 4 & 6, that they increase in severity between and not limited to 10 & 12 and then hopefully decrease during adolescence in most cases.

The Dr reassured us that this is a worrying time and the last six months stress will not have helped matters; that anxiety, stress and adrenaline contribute to the daily management of tics but was also honest in that this is likely to get worse for us before it gets better.  That in fact the tics should reach their peak during the last year of high school around GCSE time and we may have to consider a short-term medical management depending in how Cameron is coping.

Our road has not been plain sailing, and this is just another obstacle.  Cameron is now armed with the knowledge of what is happening to him, how he can explain these things to people who ask and how to calm himself so that they can ease.  Knowledge always gives us power and allows us to be in control.