Tourettes, Tics & The Complex Vocal Tic

This weekend I think I have felt the most parent guilt I have felt in my 8 years of being a Mum. 

I realise that I have a very uniqie parenting scenatio when it comes to Leo, his Tourettes and the tics that come out to play with increased anxiety. I never know when we are going to get an influx of the dreaded vocal tics, sometimes I can pre-empt them with the end of the school holidays, which 9 times out of 10 the root cause.

Then there are instances like this week, when it happens and I don't really know why. 

I noticed at the start of last week that the high pitch sqeal was more prominent. Each day after school it would increase in intensity. Then by Friday we faced a full on tic explosion, on the scale we faced when Leo returned to school after the summer holiday's last year...

From the moment Leo got in the car at 3:15 we had high pitch vocal squeals. The kind of shrill squeal that hits the ear drum and makes it shake. The kind that should not be mixed when you are driving a car. 

These tics repeated every 10-15 seconds, how do I know that? I know because I heard each and every single one, and I timed them. 

This happened all night Friday, all day Saturday (expect for the trip into town), all Sunday and still going strong Monday night. 

Friday night was by far the hardest night. 

The constant tics hurt my ears and my head, and there was no where to go to hide from it. Leo was in his room, but this is where my intense parenting guilt comes into play. I didn't want him to feel like he HAD to be in his room, but at the same time I was finding it hard to sit next to him because each squeal was going right through me.

It's almost like a smoke detector that beeps and beeps, before you have to change the batteries. Only we can't stop this. 

There was really nothing I could do for the best. We couldn't just cuddle up and watch a film, I couldn't read him a story. I was at a complete loss of what to do. Instead I let everything get to me and ended up in tears because I had no where to hide, no idea what to do for the best.

It's a catch 22 situation, I couldn't and can't do right for doing wrong. I don't want Leo to think that he couldn't or shouldn't tic in his home, in his safe place, but at the same time I just needed the noise to go quiet and to have a little bit of space, time without my ears feeling like they were going to split in two. 

Then I think about how he must feel, his throat must be feeling so sore, but he just gets on with it. Not once does he complain. I remind myself that we go through these phases, and yes they are hard but we always weather them. 

Eventually the squeal tic goes back into hibernation for a while.

Im frustrated that I can't do more for Leo, I have put in in front of CAMHS (Children & Adolescent Mental Health Services) in the hope that I can obtain CBT (Cognitive Behaviour Therapy) for Leo, but they declined on the basis that Leo's mental health wasn't 'in need' enough. It is like banging your head against a brick wall over and over again until it bleeds. Every avenue I look down and explore for Leo often results in a door banging shut in my face.

I would hate for Leo's mental health to deteriate to the point where CAMHS might think 'ok we will see him now'. I had been pre-warned that unless your bleeding, they will quite simply not see you. I am sad to report that this is exactly what I have come to find.

We are coming to the end of term, and I can't put my finger on exactly what has caused this particular flare up. I have spoken to him and asked how he is feeling, but all I can get is that he is worried about his school work, Math's in particular. Having spoken to his teacher though, he's his usual self within school, Leo supresses tics throughout the day so no one ever hears them there, but when he comes home, I get the full on storm of them.

As I write this the tics continue...

We fly to New York on Sunday, which is an 8 hour flight in close proximity with lots of other people. The thought of this right now makes me feel very anxious. So much so that I have actually been in touch with Virgin Atlantic who were really lovely. They have told me not to worry about it and advised that they can board us first or last depending on what will suit Leo better, and even asked if there is anythig else they can do. 

 

The only thing I can think of is providing all of the other passengers with ear plugs!

I am hoping that come Thursday when Leo finishes for half term, the tics may relent their hold on him. That we may be able to enjoy our holiday without Leo being held hostage by his tics.

This won't be the last time we go through this, and god knows it's not the first. It's the first time it's made me cry though, I just wish I could make it all better for him, to take them away.

We have been out shopping before now and the tics have happened in public, and we do get some looks. Mainly the kind that look to me to stop my child making such a noise, which of course I can't and won't try. When I ignore the tic (I never draw attention to them or mark them), the look changes to one that second guesses me and my parenting. 

They aren't to know, but I always wonder what I might say to someone who takes the judgement a little further than staring, and actually dares critisice.

I don't think I would be able to hold back...

Fighting for a EHCP and Mediation

Shortly before schools finished for the summer holiday, our then SEN teacher was working hard towards gathering and submitting evidence for Leo's EHCP (Education Care Health Plan), you may recall that I actually attempted to do this for Leo myself back in 2017.

Back then I hit a stumbling block, I can only assume within the school as they said that at this point they could accommodate for Leo's SEN nee

ds within the current academic setting. I wasn't convinced but agreed for the time that I would let the decision ride. Flash forward 2 years and we are talking potential EHCP's again, only this time the school are suggesting that it may be beneficial.

Of course I backed the decision entirely, the evidence gathering began and was submitted just before the end of the Summer term. I didn't hold much hope of actually achieving the EHCP as I had heard that they were like gold dust, but I did hope that with Leo's Tourette Syndrome diagnosis we may have more of a chance of obtaining it. 

Summer flew by and we were soon back at school and ready to kick start Year 4, Leo's tics had really faded to nothing over the summer holiday, but with the academic year starting again we fell back to earth with a crash. 

A month later we had the letter that I had been anxiously awaiting, a letter sealing our EHCP fate. 

It had of course been denied. 

Another stumbling block, another no, another door shut in our faces. 

Another case of Leo being on the cusp, a seemingly typical child, beautifully behaved, but had SEN needs that were beyond your typical school child, not severe enough for a 'special' school, but a delay none the less.

As I sat there reading the letter that had been issued, I decided then and there that this wasn't the end of the fight. We would appeal, we would go to mediation and if needed tribunal. 

I had a meeting with Leo's new SEN teacher who is quite frankly amazing, luckily for us she really knows her stuff having been on both sides of the coin. She once worked for the local authority and met with families to decide why and how they should issue an EHCP, and she now works as a SEN teacher within our school academy. 

We formulated a plan, we met with the Local Authority who went through their decision, it became apparent that it was a lack of evidence that had resulted in our 'No'. We had 3 months from the date of the letter to go to mediation, they told us that we should leave it as long as we could in order to gather further evidence that could potentially provide a different outcome. 

We did just that, and a few days before the appeal process closed forever I sat and composed an email making sure that I included everyone I needed to within the email chain. To go through the mediation process we had to contact a mediator, I emailed the Two that were recommended on the letter, and quickly heard back from one of them.

Before I made a decision on who I would prefer to work with, I spoke with both of the mediators on a separate basis. I opted for a man named Charles, he was full of knowledge and came with a great reputation, he role would be to listen and essentially lead the mediation meeting, he would pose his own questions and give structure to the agenda. 

Charles said something on that very first phone call that really stayed with me 'Remember when you were at school and posed with a maths question? After all is said and done, the working out was always the most important part. If you got the working out wrong, the answer would be wrong'. Charles emphasised the importance of evidence, things like costed lesson plans, he stressed that schools were so busy teaching the kids, that their working out was often lacking, and the lack of evidence was often the reason for the negative outcome.

Wise words!

It was hard getting a date in the diary being so closed to Christmas, but we eventually nailed down as many of the required attendees as we could, and confirmed the date for Friday 13th December 2019.

We met at a local hotel in the library, I brought my Dad along for moral support as Luke was away with work. Charles the mediator was present along with our school SEN and a lady from the local authority.

I had prepared an A4 page of my own thoughts and feelings which was essentially a short over view of Leo's entire educational background. I spoke about how the initial concerns were raised at Leo's 2 and a half year check and how those concerns were then highlighted at Nursery level and followed him into his school life. 

Our SEN teacher then gave her evidence, Charles did his bit and within an hour the Local Authority had decided in our favour and granted Leo the EHCP that we had been fighting for. 

It was such a productive afternoon, and I am still in disbelief that we managed to change their minds and get something that will be so beneficial to Leo throughout the rest of his education.

I do wish that this had been granted years ago, I kick myself for backing down and not going with my gut, but we got to the finish line in the end. 

For Leo this now means that he will have his own funding within school to help him achieve his individual goals, it will stay with him until he is 18 and leaves school. It means that Leo can attend any school I feel is best for him, even if it is out of catchment. We apply and it's almost a give in that he will get in.

We should have our draft plan with us by the end of January, at this point I will have another meeting with Leo's SEN teacher and we will make sure the plan is what we need. I have been advised that even if amendments are needed to the over all plan, to accept it and make the changes at a later date so that at least the ball is rolling.

I finally feel like we have got somewhere, I have spent years banging my head against a brick wall with no real outcome, but finally I have made enough waves to ride all the way to the shore. 

It's so important to always keep fighting, to always stand your ground and not stop talking until you are listened to. 

Tourettes - A Diagnosis

We were on our way home from the school run when my phone began to ring. I pulled the car over to find it was an unknown caller ID, I had a feeling it would be about a potential paediatric appointment for Leo. It hadn’t been all that long since we saw the doctor, but I had told her I wanted to be seen as soon as possible.

I missed the call and had no way of calling back, so I could only hope that they would try again. As luck would have it, they did.

I tentatively answered the phone, it was the reception at the clinic. They were advising me that they had a cancellation appointment for the very next day, which of course I snapped up. 

I am very lucky in the sense that work allow me to be flexible, and I knew that school would be more than supportive of us getting back in front of the paediatrician.

I told Leo that we were going back to see the doctor in regards to his tics. Leo and I have talked about his tics in the past, he knows what they are, and we’re very aware that the more anxiety he feels, the more the tics manifest themselves.

Leo was really pleased that we were heading back to the doctor in the wake of the squeal tics that had exploded just before they broke up for the Easter break. Thankfully over the half term they had begun to relinquish their hold, but he was still very twitchy.

When I say twitchy I mean, facial grimaces, blinking, head tilts, lip smacking and even hitting himself. I ignore them all, I want him to let everything out, I want him to feel comfortable and I want him to know that at home with his family is his safe space. When he has attempted to hold them in at school during the day, they fly out like sausages sizzling in a pan. 

I’m certain that’s what happened with the whole squeal tic.

The appointment on this occasion wasn’t at the local hospital, it was the medical centre. As it was a cancellation appointment I didn’t have a letter, just a post code. Luke arrived at work late to pick me up, which meant we to got into town at exactly 10am with no time to spare (yes I was absolutely fuming). The medical centre is in a row of 3 buildings, one being a doctors, one being a pharmacy and the last one being what we needed, if only I had known the exact building...

I wandered into the doctors, lined up for 5 minutes (taking me past our appointment time) only to be told we weren’t in the right place, I was getting so panicked. I had waited years to get in front of this particular paediatrician, and we had MISSED it!

I started plodding back to the car, defeated. When I came across the last building.... and I thought ‘I wonder!’.

Leo and I ran up the stairs to reception, who confirmed that we had found the right place and they would check to see if she would still see us. 

I sat there with everything crossed.

Seconds later the paediatrician walked into the reception and beckoned us to follow her back to her office.

We sat down, and she started talking to us, she already had all of Leo’s information on her computer screen. Details of the last appointment with her colleague, the letter from school about the squeal tic and lots of other historical information. We had recently had an updated educational psychologist in school, which I emailed over to her while we were in the appointment so she could get a feel for how things were going on an educational footing.

She asked Leo questions, Leo answered. She said something along the lines of ‘I can see your having issues with your hands’, I cannot remember the exact wording, but Leo was doing his twitchy tics as I described earlier. I was just glad that they could be observed.

I told her my worry was that she was going to discharge us. I told her I thought that was wrong and that we needed to be on her books going forward. Leo needed the support from the professionals now.

Within about 5 minutes, we had a verbal diagnosis.

‘I think it’s fair to say that because the tics have been in play for over 12 months, and there has been a vocal tic combined with motor tics, I am quite happy to diagnose Tourettes’.

I could have thrown myself across the room and hugged this woman. Finally a reason for Leo as to why he can’t help doing these things. Finally a reason for him to tell people who ask why he can’t stop. 

Finally just a reason.

Leo and I had spoken about Tourettes before, he knew it was just a medical term for his tics. But it means that I could go into school and they could explain it to his class mates.

We talked about potential medication, and both said simultaneously how we didn’t want to medicate. 

She was happy that I was of the same mindset as her. We discussed a potential CAHMS Route at some point in the future if needed, so we could access CBT (Cognitive Behavioural Therapy). At this point though we both agreed that the best way to was to try and manage Leo’s anxiety.

Something we strive to do anyway. The problem is a lot of Leo’s anxiety stems from finding school difficult. Leo goes into year 4 this coming September and I know he finds the expectation very difficult, and I’m sure this is why the squeal tics came to the surface. 

The doctor told us that we would review in the next 6 months, but now we were in the system, if there was a sudden flare up we would be able to get an appointment quicker, and we would get seen. 

So that was that, the appointment came to a close, and it was back to work and school. 

Only this time with a diagnosis.

Tic's, Anxiety & back to the Doctor's

One of the reasons that this blog has been a little (OK neglected) quiet is that with Leo being that much older these days, I’m that more cautious in what I share. I think that is only natural, and as bloggers we have to take a step back and not ‘over share’ in the way we did when they were younger. 

I’ve shared Leo’s struggles with education over the years, and with recent developments I feel that I need to share these posts. 1. To raise awareness and 2. To promote acceptance to diversity.

Some of you may remember me talking about Leo and his tics, when I say tics I mean involuntary movements that he has no control over. 

Some of which are...

Throat clearing, head tilting, lip smacking, squeals, facial grimaces to name a few. 

Stress and anxiety play a pivotal role in being the trigger for the tics to escalate, and a big factor in the nature of Leo's tics.

It all seemed to kick off most profoundly when we were on holiday last year, I noticed that Leo was contorting his face and grimacing on a very regular basis. It become noticeable to my whole family while we were away, and when we got home I mentioned it to Luke.

Luke quickly dismissed it, but then when we went out for dinner one night, he realised for himself. This was July 2018, and I gave it a few months to see what happened with it, but by October it was still a regular occurrence and I decided to book Leo in at the doctors.

We went along and I explained what was going on. I have to be honest and say I was thinking Tourettes, and that is why I was pushing for a referral to finally see a Paediatrician. The Dr at this point didn’t think it was necessary. She said it was more than likely just a phase, one that he would grow out of, Luke was quick to agree with her.

I on the other hand kept on pushing for the referral. 

I left thinking that we weren’t going to get one, but it later transpired that she had indeed referred us. It didn’t come through for months though, and that took us into this year, I want to say March.

It was a cancellation appointment that we eventually received, which I welcomed, but by this point Leo’s tics had really dropped down, and seemed to have gone away for the most part. Still I gladly accepted the appointment, and we went along as a family.

I took the morning off work, school let us pick Leo up and take him (not that they had ever really noticed the tics in school at this point) and off we went.

It was at our local hospital, a nurse called Leo’s name and then they took his height and weight in readiness to work out his BMI, which I knew was ideal.

Then it was time to meet the Paediatrician, he asked us questions, and then asked Leo questions. Some things were just directed at Leo, and others were based just off of his personal observation. 

Leo’s tics were pretty much none existent on this day, not like they were back over the summer and the end of the year. In fact it was almost like the Dr had been right, and it was just a phase.  

It was no surprise to me when we were discharged (all be it with an open invitation to return if needed), which at this point, I didn’t think we would be needing....

April rolled around quickly, just as the months always seem to do these days, it was quickly approaching Easter and the children were all dreaming of the Easter Bunny and chocolate. 

I was on the school run, just like I do everyday, the bell rang and his teacher was spotting parents and matching them up with their children. 

I spied Leo, and out he came. Throwing his bag at me for me to carry so he could run around. I asked him how his day was, he replied but there was something different. There was a squeal. A high pitched squeal. 

A squeal coming from Leo every couple of seconds. We got back to the car, it was still there. 

We drove home. It was still there and boy did it make me jump on a number of occasions.

We got home, he did his reading, he was so twitchy. His faces were back, he was hitting himself. And there was the squeal.

I knew this was a tic, he has had it briefly before but never as aggressively as this. I didn’t mention it to Leo, one way to really knock a child is to tell them to stop doing something that they have no control over. 

I’ve always found the best way to deal with tics is to just ignore them, but when it’s s vocal tic with the nature that this one had, I knew I was going to have to address if first thing in the morning at school. 

Leo did bring this tic up with me though, he told me how he was worried he was going to get into trouble and that he couldn't help it. 

I ran Leo a big bubble bath, I got him into his PJ’s and read him a story.

The squeal continued. 

Once Leo was tucked up in bed, I went downstairs. I sat on the sofa in silence and the squeal continued, it went on until eventually Leo fell asleep.

The next morning I took Leo to school. He went in absolutely fine, but inside my own stomach I had that sinking feeling, the feeling that meant I didn’t want to send him in. I just had a foreboding feeling that this was not going into be a good day.

I spoke to his teacher. I played her a recording of the squeal so she could gauge how consistent it had been over that evening. I explained everything I have written here in this blog entry. She had not noticed it the day before, and I couldn’t put a marker on what would have caused it, he had been his usual self that morning previous as I dropped him off.

My biggest concerns were other children being nasty, or Leo getting in to trouble for being disruptive. 

Then I went off to work. By about 1 pm that day I had a call. A call from school. I knew it wasn’t good news. 

It was our SEN teacher advising me that Leo’s squeal tic had been very prominent in class, and it had caused class mates to laugh at him. Some told him to stop, others that he was annoying... it didn’t help his confidence one little bit, and I knew that this would have knocked him for 6.

I was tearing up, the last thing I wanted to do at work, but they fell none the less. 

Leo was upset so they had taken him out of class and created a worry box, they discussed things he was worried about, and while Leo wasn’t in class, they spoke to the children about kindness and how Leo couldn’t help it, and he couldn’t stop it.

It’s a hard thing to explain to a class of 7/8 year old's.

This was 2 days before the school closed for half term, I asked the SEN teacher to put this In writing for me so I could use it as evidence for the doctors appointment I was going to be booking. By the time I collected Leo that afternoon, I had the written evidence in my hand.

Leo was so twitchy. It broke my heart, he looked broken. The squeal was still there, his shoulders twitched and his head was flicking. 

The tics were back worse than ever.

Some of the boys he called friends had fallen out with him. But other boys had taken him under their wing, and for that I will be forever grateful. 

I spoiled him rotten that night. A trip to Tesco’s for a new tin of Pokemon cards, the new boys he was playing with had battles at lunch, and Leo wanted to join in. A tub of lavender Radox, lavender spray for his pillows and a McDonald’s for dinner.

We got home and I knew I had to try and get him as relaxed as I could, and that was the start of our nightly bubble bath I would run for him regardless as to whether or not he needed one.

I called the doctors the following morning and explained I needed an urgent appointment with our doctor as soon as possible. I wanted her to see the tics and how aggressive and frequent they were at this point. 

We got one quickly, the squeal tics were still there when we went, which in a way I was pleased about because it meant she had no choice but to hear it, to witness it as we all had.

As we sat in the waiting area, the tics came fast and thick. I could feel the watchful eyes of other people, other parents judging me. Silently telling me to address the situation with my 'disruptive' child.

I sat there daring anyone to address me. Nobody did.

 Our Doctor called us in. I told her we needed referring again, and she agreed it could be neurological. Which was a step in the right direction, and eliminated the phase idea that was proposed on our last visit. 

Now it was a waiting game again.... but thankfully we were lucky enough to get another cancellation appointment in May.

To be continued...