Thursday 31 October 2019

A Tourettes Update

7 months ago Leo was diagnosed with Tourettes Syndrome, this was off the back of a particular tic that came into the equation just before Easter last April.

The squeal tic as it has come to be known in our house likes to materialise during periods of high anxiety for Leo. God I hate writing that my little boy suffers from anxiety, it really is something that i wish I could take away from him and make all OK. Unfortunately all I can do is be there for him, listen to him, advocate for him and help him navigate where we go from here.

As with everything in life, there is no magic potion that just fixes all of our problems and insecurities, but oh how I wish that there was.

Tic wise we had been doing incredibly well, the squeal tic that has materialised in April had faded to nothing over the course of a few months. Leo doesn't take medication, it was something that we decided wasn't essential at this stage (and I hate the idea of side effects), this was off the back of the diagnosis appointment.

We were pretty much tic free all over summer (apart from the usual motor tics that we just consider normality), but with the end of summer and the return to school on the horizon.... Leo's squeal tic came back for round 2, and it was more persistent and aggressive than ever before.

Leo's anxiety is based around his school life, he worries about the work expected of him and finds it difficult which in turn makes his anxiety heighten.

It's a vicious circle.

The week before Leo returned to school, we went to purchase his new school shoes for the coming term ahead. Leo chose the ones he wanted and we went on our merry way. That night after I read Leo his story and tucked him up into bed.... the squeal tic materialised. 

As soon as I heard it my heart sank. I knew he was feeling anxious about starting year 4 and unlike you and I....Leo can't contain that anxiety (and I keep telling him to just let those tics out, but due to the nature of the tic he gets very self conscious about them and attempts to hold them in).

With the return to school getting the closer, this particular tic kept getting more persistent. The squeals were relentless and always worse at night. On that first day back at school I discussed it with his new teacher (and thankfully she was already very aware about the Tourettes diagnosis), and at the end of the day I caught up with her again to be told that she hadn't heard the squeal tic at all that day...

That afternoon and into the evening, the tics kept coming and coming. They kept coming until he finally succumb to sleep. Which was well after 10pm that night despite having a relaxing lavender bath, story and being in bed fro 7pm!

Those first few weeks at school were horrendous, the squeals were constant, louder then ever and just kept coming one after another.

It was made even worse because he was holding the tics in at school, so when he came home and was in his safe place, the tics rolled out of him like someone had shaken up a bottle of Pepsi and then took off the lid. 

It is now November and the squeal tic is still here, it's been here for over 12 weeks. It has been varying in intensity over the last few weeks, and I was optimistic that we might be seeing a decrease in the severity of this particular tic, but over the last few days it seems to be heightening again. 

Although if you were to compare it to those first few weeks at school where I would certainly say it was charting a 10, it is now currently at more of a 6.

We popped to our local Aldi last night and Leo was ticcing as he went around. Yes he had some funny looks (as did I) but nobody said anything, and if they had dared I don't really think I would have been able to hold back. 

I am so fiercely protective of my boy, they would not have liked the response if they had dared tell me to make him stop.

It's the shop my brother works at, and he had already explained to a number of the people that he works with that Leo has Tourettes, so that made life a little easier. 

We have finally had our appointment through for Leo's first Paediatric appointment since the diagnosis, which I am really glad has come through. I was worrying that we had slipped through the cracks as the lady we saw for the diagnosis has now retired, but thankfully the letter arrived and we see the new Dr on November 19th.

I am still not ready to talk about medication, because I know that as soon as we can get Leo's anxiety back to a more realistic level.... We may very well see the demise of the squeal tic again. I do worry about every holiday that comes around now, because I know that with the return of school will come a wave of anxiety that we will ride for months at a time. 

That may very well be the reason that the tic is escalating more than it was because half term is almost up...

I have recently treated Leo to a aroma diffuser in his room that diffuses aroma therapy oils, and upgraded his night light to a bubble lamp, I am hoping that these small additions help to relax him.

 Another change we have implemented is a later bed time...I have done this because when I put him to bed at 7pm (like we always have) because he ends up staying awake later ticcing. If he stays awake later he is usually less ticcy and goes to sleep faster... and I like to think that the anxiety is less so he gets a better nights sleep.

If I am honest it is all trial and error at the moment, all I can do is continue to educate people about Tourettes and help Leo navigate his path. 

I will update again once we have had this next appointment, but I would like to try and get Leo in for some CBT (Cognitive Behaviour Therapy) as I feel this will help him focus his attention and maybe help him combat his tics into other avenues.

Regardless of Leo's Tourettes and Tics, I am so proud of the little boy he has become. He has been dealt a difficult hand but it never stops him, he has some great friends and his compassion for other people is incredible. 

Leo is a true superstar and I know that this too shall pass. He will come out the other of this, and I will be there to help him with whatever comes his way next.

Monday 28 October 2019

Leasehold Fleecehold

Leasehold Fleecehold

The last month has been a busy one to say the least, at the start of October I gave notice on the house I was renting. We were supposed to be buying our forever home, Luke, Leo and I, but unfortunately we cannot sell the flat Luke owns.

It's taken us a while to get to the cause of the issues we have experienced in selling Luke's property, 12 whole months in fact, but finally we have got to the bottom of the root cause, and unfortunately it has made Luke a prisoner in the flat he purchased, a flat that is currently un-mortgage-able and not even an attractive deal for a cash buyer..


The leasehold. 
(Or should I say Fleecehold!?)

We have had a number of people attempt to purchase this property over the course of a year, at least 4 first time buyers with a mortgage, and 1 cash buyer. (So I guess it's good that people do want to buy flats in the long run!)

All the buyers who hoped to obtain a mortgage crashed and burned. Their mortgage offer in principal was absolutely fine, but as soon as they got to the underwriters for an official offer, it was a big fat no.

The first 3 buyers didn't really shed a lot of light on why this was happening, and the estate agents didn't have a clue. We had found what was going to be our family home, and time was ticking. The chain had collapsed each time a buyer pulled out and I can only imagine how annoying this must have been for the person we were buying off.

We discovered that the banks would not lend due to the ground rent of the lease being more than 0.1% of the property value. As it stands the ground rent is £500 per year, and this doubles every 25 years.

This condition paired with the £500 annual ground rent is the root of all of our problems trying to sell, and we are not alone in this feat.

When the last mortgage offer fell off the table, we put the flat back on the market as a cash only purchase. This is of course meant that we were going to take a substantial hit on what would be offered, but we were at the point where we needed to cut our losses and get on with our lives.

We accepted a cash offer, and we had found a new property (a beautiful Victorian terrace with so much space!), and everything progressed beautifully. We were so excited to be making plans, and we could really see ourselves living our best lives in this house. 

Then the stumbling block... The cash buyer had been advised by their solicitor that they should not proceed with the sale.


The lease. 

They advised the buyer that the 25 year doubling clause of the lease was in fact toxic.  

The buyer got scared and subsequently backed out, which of course meant that we had to pull from our sale (again, after spending more money on searches and what not for a second property!). All the while we were running two properties with all of our possessions packed in readiness to move house.

It was then I realised that in order to move on with our lives we needed to consolidate and stop forking out money on a house and a flat. I handed in my notice and have not long handed the keys back. It's been a month of cleaning and sorting everything but we our finally at the other end of the move. 

The boxes are un-packed and there is finally light at the end of the long, dark lease tunnel. 

Luke has sought legal advice, and there is a solution to our problem, but it is going to cost us an arm and a leg. 

We can apply for a statutory lease extension, this will add 90 years to the the lease (I believe that there are still 112 years on the lease at this point anyway), but by doing this it will take the ground rent down to a peppercorn rent (something very affordable ££) which will in turn make it mortgage-able again, and the 25 year doubling won't be as daunting anymore. 

I mean if the ground rent was taken to £50 per year, in 25 years it would only be £100. 

Sounds great eh? To make this happen thought we need to employ a solicitor and we need to do this formally. If we were to go directly to the lease holder they could potentially do something to variate the lease terms... But it would in fact be an informal agreement that could make our situation worse. I have read of people accepting informal agreements where the ground rent is reduced... but the doubling clause goes from 25 years to 10 years... or even 5!

This of course means it looks attractive in the here and now, but very quickly can get out of control and will put you in even more of a negative position.

So the plan is this...

Luke called a meeting with the property management who in turn invited the other owners of the flats, they brought a long a solicitor who deals with leases and is very clued up on what must happen next. 

We will employ a solicitor to do all the leg work, get a quote from the leasehold on how much a statutory lease extension will cost , we will plough ahead (it could easily take 12 months), and could cost anything from £10k right up to 25k! We won't know until we get the official quote...

Ironically we will have to pay not only our legal fees.... But also the legal fees of the leaseholder. For the lease company this is a massive payday. They know that there comes a point where flats will become un-mortgageable, and that people will have to throw thousands of £ in their direction. 

It is wrong.

It's crazy that this can even exist in modern day Britain, it doesn't sound like it should be legal, or even a reality, but there our thousands of people trapped in their homes due to their lease holders keeping them prisoner, unable to sell. 

Luke has been advised to seek legal advice in regards to the solicitor who took him through the sale of the flat in 2016, because there was never any emphasis or warning on the leasehold.

It has been said that he should never have been given a mortgage on the property in the first place...

Now with all of the media attention on new builds and the leaseholds that have been attached to them, there is a lot more negativity and attention on leases, and the solicitors and lenders in turn are being much more wary.

That is great for the people browsing the housing market, but not so great for the people who want to move and get on with their lives.

2018 ended amazingly, we were newly engaged, buying a dream house and we even found out we were pregnant in early summer. A month later the pregnancy has ended, the house has fallen through and we cannot sell the flat.

Subsequently there is no wedding planning due to all available money being saved to sort out the lease.

2019 has been full of bumps in the road, but were still smiling and making the most of a not so great situation.

Let's hope 2020 is a better year.