Tourettes Tales

A Tourette Tales Christmas

By January 8, 2016 General
Fun at Harrod's Christmas Grotto

We have had a very busy few months in the Tourette tales household.  Christmas is a big deal in our house with preparations starting early.

This year, due to shortage of tickets our annual trip to see Father Christmas in the Harrod’s Grotto was in mid November.  This was our 10th visit to the grotto and was absolutely amazing.  George sometimes struggles with crowded places but as we had a weekday evening slot the store was fairly quiet and he coped really well.  The wait in the queue passed quickly due to the interactive games and activities along the way which we all enjoyed.  There was also an option to skip the queue if George found he couldn’t cope, the booking staff were very helpful and made us feel welcome and comfortable.

Our Christmas really began on the 29th November when we awoke to find the elves had fully decorated during the night, put up our tree and even changed the bed covers to Christmas ones.  Our elves Chilly and Chillyette had arrived with a North Pole breakfast.  It was like Christmas day.

The Christmas period means a lot of changes in school routines for George and lots of day trips and excitement in the run up.

We made the decision many years ago that the whole family had to do the things we enjoy and it wasn’t fair to George or his siblings to cut out all our traditions. Although George struggles at times, he looks forward to the things that make our family Christmas.

We have had to tweak things over the years to allow George to enjoy things and cope with them and this year was probably our most successful Christmas.

We had our elves stay with us throughout December getting up to all sorts of mischief in the night.  We managed to visit the reindeer at the garden centre, the boys went to Beaver and Cub scout camp together, carol services, crib services, walking around to see the local lights.  It was amazing to see George taking part in everything and enjoying it.

Christmas eve can be a tricky day for George, lots to do and overwhelming feelings that sometimes bubble over.  This year we made sure all the chores were done the day before so we could relax during the day.  We split up the many traditions over the day, we made our reindeer dust and sprinkled it outside in the morning we hung our stockings early and only had one difficult moment mid-afternoon and a bit of over excitement at bedtime.

One of the things that helps George during this period of change of routines is the fact that we do the same things every year so although there is a lot going on George knows exactly what to expect.  We allow plenty of time for activities like baking or craft so George can join in at his own pace and dip in and out as he feels comfortable.

Father Christmas brought George a few new fidgets that went down really well. He has expressed an interest in doing a video review so watch this space.

IMG_7984

 

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Half Term in the Tourette Tales Household

By November 10, 2015 General
Mr Ploppy, George's giant fidget toy

Holidays can always be a worry, the lack of routine, different places to visit can be difficult.  This half term we had lots planned, we caught up with friends at the local farm and George got a chance to do some pond dipping.  This was a really lovely day and he coped well despite being out all day.  We squeezed in a last trip to Chessington World of Adventures before our anual pass expires, we definitely held our breath for this one as the last visit was George’s birthday and we had to cut the day short as George wasn’t coping.  This time the weather was better and despite being very busy we managed to get on everything we wanted to and had a fantastic day.  The highlight of the day for George was his visit to the gift shop where he found a giant fidget toy.  He has named him Mr Ploppy and hasn’t left it alone, £7.50 very well spent.

We saved a trip to Legoland Windsor for the very end of the half term, there were a few times we had to take time out to settle George but we didn’t have to leave, we stayed until the fireworks which were out of this world.  George really enjoyed them especially with his special glasses that turn the fireworks into Lego bricks.

The days we were out were really good, at home was less peaceful and unfortunately we ended the fantastic week with a rage attack ending with his brother’s ipad being broken.  Back to reality with a bump.

 

 

mrploppy

 

 

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Superheroes

By October 22, 2015 General
George in his somewhat unorthodox Superhero costume

Whilst having a sort out of the children’s artwork and school work they’ve brought home, I came across this Poem.  In year 2 George’s topic was Superheroes, at the end of the topic he took part in a class assembly and read out the poem.

I thought it was very appropriate for all those fighting hidden battles and dealing with things even as a parent I can’t really understand.

“A hero is the kind of thing that you were born to be.

But you don’t need to soar or speed or swim under the sea.

You just need to be yourself

so strong and brave and true

And soon you’ll see that you can be a superhero too.”

As part of their topic they also had a dress up day, they all got to chose their favourite superhero and come to school in their costume.  Uh Oh, costumes and George do not mix, George has never got involved in dress up games even as a toddler.  Dress up days cause George a huge amount of anxiety.

On this occasion George agreed to dress up, only if he could go as Darth Vader.  Not a suitable candidate for a Superhero right?  George asked his teacher if he could be Darth Vader, she initially said no as Darth Vader is a “baddie”.  George thought about this and came up with the argument that although Darth Vader was the “baddie” at the end he was a hero as he died to save his Son.  Impressed with the argument and the reasons behind it, he was given permission to wear his costume, the only day he has willingly worn a costume.

George in his somewhat unorthodox Superhero costume

George in his somewhat unorthodox Superhero costume

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Secondary School

By October 15, 2015 General
Moving-On

In September we began our search for a secondary school even though it doesn’t seem five minutes since he started nursery school.  As George has a statement of special educational needs, we have begun to look around now, at the start of year five rather than year six.  This is so we can have our school choices and evidence ready for his year five statement review.

Not only do we have to find a school that best fits his needs, we are in the position that we live in the neighbouring borough to his current school, this somewhat complicates things as it is harder to get a place at an out of borough school.

We first took George to look around my old High school, I’ve not been back in the 16 years since I left so I was really excited to take a trip down memory lane.  The school has expanded extensively so there were many new buildings to see and explore.  As we started our guided tour it became apparent that George was really struggling, his tics were in overdrive and the signs of anxiety on his face were plain to see.

There were lots of practical demonstrations to see and games to take part in as we went round.  When we arrived at the science lab we realised there were going to be issues for George we hadn’t even considered.

We had discussed the huge increase in size from a primary school of just 300 or so to a high school with 1500 pupils, the moving to new classrooms with new teachers each lesson and the problems this could cause.  We hadn’t really thought about the new lessons George would get to partake in.  At primary school there are no practical classrooms so George has never been in a science lab, woodwork, sewing or home economics room.  George was invited to take part in a science experiment.  Whilst he was listening to the teacher speak he was absent minded and squirting various chemicals out of the pipette.  Concentration and impulse control in practical lessons could be tricky.  Then there is the smell of the lab, George is very sensitive to smell and the overpowering smell of a science lab could be unbearable to George.  A lot of George’s tics involve touching his face or chewing things, not a great idea in a science lab full of chemicals.

On the positive side, this particular school has an ASD hub.  Although George doesn’t have an ASD diagnosis and would be based in the mainstream classrooms, as a lot of his symptoms cross over into ASD territory he would be able to make use of the resources there during lunch, break times or if he needed for particular subjects.  He relaxed a lot more in this room and loved exploring the sensory toys they had out on display.

We have looked at a few more schools and they have varied enormously in the support they can offer.

We now have time to have a long think, re-visit the schools and decide which can best fit his needs. It is such a worry how he will deal with such a huge transition, just moving from one year group to another takes weeks of preparation, it’s a good job we’ve started early.

I’d be glad to hear any words of wisdom from any parents that have already tackled the transition to high school, what steps you took, what helped ease your child into the new school?

Moving-On

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Birthday Celebrations

By October 11, 2015 General
Feeding the Penguins , George's dream come true.

Sometimes we forget about George’s difficulties, his behaviour and tics are just part and parcel of everyday life for us.  Then something happens that bring it all back into focus and my heart breaks all over again when I see how hard things can be for him.

George has had a love of penguins ever since he had his first penguin comfort toy as a baby.  I don’t know how he manages to sleep at night as there are so many cuddly penguins sharing the bed with him.  For his 9th birthday we had agreed we would try and arrange for him to feed the penguins at the zoo.  Unfortunately this year the zoo had renovated the whole penguin enclosure and the penguin feeds were unavailable for most of this year.  We anxiously kept checking the website for details of when the penguin feeds would be resumed.  Finally, with only weeks to spare, the experience was once again advertised on the website.  Next step was booking it, the penguin feed is an experience you can only book on the day, this is because they don’t make a decision on whether the feed will be taking place until the penguins have been checked each day.  This was a problem for us, George likes to know what is happening and does not cope well with surprises.  The best I could do was arrange a phone call on the morning of George’s birthday to let us know if it would take place.

25th August arrived and we prepared to go to the zoo, still unsure what would be happening.  Finally, whilst on route and only ten minutes away from the zoo the phone call came confirming that we would be able to feed the penguins.  We would have to go straight to the kiosk to book it when we arrived as there was only space for two people per day.  When we arrived and it was confirmed we would be feeding the penguins today, George didn’t know what to with himself.  He was trying not to cry and his tics went into overdrive, he was flapping and making noises uncontrollably.

Thankfully, we only had an hour to wait for the feed and it was the most magical experience for George, I did it with him and to be in the enclosure surrounded by the penguins at your feet whilst hand feeding them was a memory we will always cherish.  We have some lovely videos and photographs to keep.

After the feed we took George to the shop and bought him an adopt a penguin kit, after carefully explaining he wouldn’t get to take one home with him.

Once the feed was over we headed over to the rides, this is where things went badly wrong,  George went into complete meltdown, tore his wristband off and started being very aggressive towards us.  We had to make the decision to leave the park as he was unable to calm down and he just wanted to leave.  It is such a shame that he can’t always enjoy the things he loves the most, he cannot process his emotions or articulate them effectively so any strong feelings either happy, excited or sad, worried or upset come out as a rage or meltdown.

Thankfully, after a while calming down at home he was able to have a birthday tea with close family.

Feeding the Penguins , George's dream come true.

Feeding the Penguins , George’s dream come true.

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Medicate or Not?

By October 7, 2015 Back Story, Medication
A big Decision

One we’d had time to process the diagnosis,  we had to make the decision on whether or not to medicate to help control the tics.  We spent a while discussing the options.  We included George in this decision and we all decided to try Clonidine.  To see George in pain and crying with his mouth tics, being sent home from school because his face had bled all over his shirt and muscle soreness from repeatedly clenching muscles was the main reason we went ahead.  George had always had trouble sleeping and this was having a knock on effect with his behaviour and school.  It was hoped the Clonidine would ease this problem too.  We chose Clonidine over any other medication as it is the medication with the fewest side effects.  Another benefit of this medication is it can be used to treat ADHD, so although they were unwilling to re-assess for this, this treatment could help with the ADHD symptoms.

We started off on a very small dose of Clonidine and very slowly along with regular blood pressure checks increased the dose until it had an effect.  The effect on George’s sleep was incredible, from staying awake hours and hours after bedtime, waking in the night and getting up at the crack of dawn he was going to sleep at a reasonable bed time, allowing the rest of the household to get a good night’s sleep.

Clonidine isn’t a magic cure, we explained to George it won’t take the tics away completely but would help.  George still gets new tics regularly along with some old faithfuls, there are times they are barely noticeable and other times they seem to be as bad as ever.  This is something George sometimes struggles with.  We’ve had tears when tics have become bad again because “you told me this medicine will help me”.  One of the toughest times we had was when after a few months of taking his tablets, George asked “How long will I have Tourettes for?”  We had to explain that it’s not something that will just go away like a cough or cold,  when he realised this was a long term deal he was beside himself.

Medication is a very personal decision and not one we took lightly, there isn’t a right or wrong answer, like everyone else we made the decision we felt was best for George.  I know many people like to wait until the child is older or try alternatives such as supplements before tying medication, you just have to do your research and make a decision you feel is right for your family.  Don’t let anybody make you feel guilty what ever option you decide.

Tourettes Action have some good information for people deciding on the path that is best for them with regards to medication.  Click here for further information.

A big Decision

A big Decision

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Twits

By October 1, 2015 Back Story, Diagnosis

Following the diagnosis we explained things to George and to our surprise he took the news really well.  He was confused the first few days and told everybody he had “twits”.  He was so pleased to be able to tell people “I can’t help it”, I also found the way people reacted to George changed dramatically once I was able to explain to them why he does what he does.

We read the leaflet we were given “What Makes us Tic?”, and researched the condition online.  Everything we read described George perfectly, sensory issues around clothes, need for sensory stimulation, sudden extreme rages, OCD type symptoms and sleep issues.  I cannot believe nobody made the connection.

We asked at our next appointment, if ,  given the fact a very high number of children with tourettes (figures quoted range between the 80% and 96%) have ADHD George could be re-assessed, we could not believe that with the symptoms he displayed he was in the minority.  We were told no, the original report was very clear and they could not question another colleague’s diagnosis.

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Finally A Diagnosis

By September 30, 2015 Back Story, Diagnosis
Our first glimpse into the world of Tourette Syndrome

George started his psychotherapy sessions in October 2012.  During this time he was seen on his own every week and my husband and I had a separate meeting every other week.  Gradually, George started opening up more and revealed how deep his communication issues and lack of emotional competency ran.  He built up a good relationship with his therapist and was able to use art and games as a way of explaining himself to her.

During this time his tics had become so bad he was ending up with bleeding lips and a sore face from constantly wiping his mouth, opening his mouth wide and rubbing his face.  He also developed a tic which we didn’t realise was a tic, he regularly spoke in what I can only describe as a growly voice. George used this voice so much that we rarely heard his usual voice.

In November 2013 it was suggested that they would like to ask a colleague to sit in on the next meeting to assess George’s tics.  Still at this point Tourette’s wasn’t directly mentioned.  As the tics had been ignored for nearly 6 years we didn’t think there would be a diagnosis.

We attended the next meeting and was a little concerned that George’s tics didn’t seem as bad as usual and worried they wouldn’t be seen.  The Dr however picked up on even his subtle tics and tics we hadn’t even picked up as being tics.  We went through a list of tics he’s had in the past and a history of when they started.  At the end of the meeting we received the news that George does have Tourette’s syndrome.  It was a very emotional moment.  We weren’t really expecting that diagnosis and it came as a blow.  On the other hand here was the answer we had fought for all these years.  It wasn’t bad parenting, lack of a bond, lack of discipline, a figment of our imagination; George has a condition, one we can get help for and finally start to get to know who George really is.

Once the initial shock wore off I was quite angry, for all these years I’d tried to get a diagnosis for George but instead was made to feel like a bad mother, paranoid I was making things up and spent years using discipline techniques that were detrimental to George’s well being.  Things could have been so different for our family had we received this diagnosis earlier.  The kicker for me was the criteria for a Tourette’s diagnosis is verbal and motor tics lasting for more than a year, this diagnosis was 5 years too late.

We were given a leaflet from Tourettes Action titled What Makes us Tic?, something we read through many times.  The Tourettes Action website (www.tourettes-action.org.uk)  has some fantastic resources and great information for schools as well as families.

Our first glimpse into the world of Tourette Syndrome

Our first glimpse into the world of Tourette Syndrome

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Plodding Along

By September 30, 2015 Back Story
Lovely Land and Angry Land

We began to give up on ever getting a diagnosis for George. After a long time of attending family therapy and not getting anywhere we had another meeting with CAMHS and they recommended George attend 12 to 18 months of one to one psychotherapy. Psychotherapy is a resource that is usually very hard to access, alongside this we would have twice monthly meetings with a therapist to discuss how things were going. We took them up on this offer, anything to finally understand George’s world. It’s very hard to help someone when you don’t know what they are thinking, never knowing if their actions are deliberate and need sanctions imposed or a symptom of something else where a different approach would be better. We fumbled along never knowing if we were being too harsh on George and punishing him for things he could not help.

Lovely Land and Angry Land

George’s artwork, Lovely Land and Angry Land. The very black and white way George views the world.

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bloglovin.com

By September 29, 2015 General

You can now also find me on www.bloglovin.com

Follow my blog with Bloglovin

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