13 year old son had a mixture of diagnosis, Tourette’s syndrome, high anxiety and Asperger. The consultant told us he had one of the worst juvenile cases of Tourette’s she had ever seen. He had a team of professionals managing his health this consisted of a Psychiatrist, Psychologist, CBT therapist, Art Therapist, social worker respite carers and occupational therapist. He has also had contact with physiotherapists and Wheel chair services. In turn this lead to him being on enough drugs to sedate a small horse, these drugs were not licenced for children and even if he were an adult the dose he was on was over the recommended dose and the impact it had upon his and the family’s life was huge. I feel I need to explain how things were so you can appreciate how much we all live the life we love now.
My 13 year old son had a mixture of diagnosis, Tourette’s syndrome, high anxiety and Asperger. The consultant told us he had one of the worst juvenile cases of Tourette’s she had ever seen. He had a team of professionals managing his health this consisted of a Psychiatrist, Psychologist, CBT therapist, Art Therapist, social worker respite carers and occupational therapist. He has also had contact with physiotherapists and Wheel chair services. In turn this lead to him being on enough drugs to sedate a small horse, these drugs were not licenced for children and even if he were an adult the dose he was on was over the recommended dose and the impact it had upon his and the family’s life was huge. I feel I need to explain how things were so you can appreciate how much we all live the life we love now.
Tourette’s caused Pierce to have no control over his body. His limbs would move so quickly that it would appear to an outsider that he was having a fit, We called them tic attacks. At his worst he would have up to 50 of these a day. He could not feed himself, go to the toilet independently, wash dress etc. He was 10 years old and required 24 hour care. He had to sleep on a mattress on the floor because the fits would make him fall out of bed. This meant that my husband and I took it in turns to care for him day and night. Obviously I had to quit work as there just was no time for anything other than caring for Pierce. On top of the tic attacks Pierce would say socially unacceptable things but this was the least of our worries, words don’t hurt him like the fits did. The tic fits caused anxiety and the anxiety caused non epileptic seizures. These meant that Pierce would go floppy and drop to the floor with no warning. It was his body’s way of saying ‘enough’. The tics that were not tic attacks also really impacted upon Pierces life. His head-butt things, punched pinched kicked banged anything and everything. Obviously this caused injuries to Pierce and other people. 2 and a half years ago things were so bad that we had no choice but to give up our family home (a house ) and move in to a bungalow that had wheel chair access and a wet room. Occupational therapy supplied us with wheel chairs, hoists, transfer boards, ramps, slide sheets, turning circles, toilet frames, shower chairs and special cutlery and beakers. Pierce was unable to attend school full time as he had such specific variable needs. He also couldn’t stay awake past 8.30pm. It impacted upon his life so much, we could never guarantee we would be able to go to any events and if we did manage to make it if we could stay until the end. We have been blue lighted out of festivals, taken through airports with ‘special medical escorts’ had a fit on the pavement outside the London eye. As you can see we still tried to live life just it didn’t always go to plan. Asperger’s meant Pierce took things literally and I mean everything, I’m not sure if you have every considered how confusing the English language actually is? He also needed everything to be in a routine and have an exact time, if the routine was not followed this would cause anxiety that would cause tics that would cause a non-epileptic event. He also got over stimulated by everything, supermarkets were a no no, I never realised how many colours noises smells and sounds went on during the weekly shop.
Anyway Pierce was going through another low patch fitting and collapsing all of the time and unable to go to school. I was working part time thanks to huge input from Pierces team (I went to work for a rest. . . I’m a nurse!!) We had been told that there was one increase in medication left and if this did not work Pierce would have to be slowly taken off his medication and then started on another. Period of time for this was 3 months. This was a living nightmare for me, very selfishly I could not face seeing my baby in hospital being so ill, I didn’t want what normality we had to be taken away. I had nothing left to give. Poor Pierce just existed not living. Life was not good.
It was a day off work for me and Pierce was not at school as his tics were bad. I heard a bang and found Pierce collapsed on his bedroom floor having a tic attack, I think it was the third one so far that day and it was only 10am. Tears started falling down my face; I walked to the kitchen picked up the emergency medication, the phone a bar of chocolate a drink and my electronic cigarette. I walked through to Pierces room crying (I never let him see me cry) I sat on the floor gave him his medication ate some chocolate fed him some chocolate and we both cried. I asked him what he wanted me to do and he said ‘I hate this why won’t it stop’. It was then I remembered my mum telling me about the lightning process. I didn’t know much about it at the time but I asked Pierce if he wanted to try. He said yes then we both cried a bit more.
The rest is a bit of a whirl wind. We phoned Kathy who agreed we were ready for the process. Day one arrived and to be honest I’m not sure if I had any expectations I was just so pleased we had managed to get to the session. Kathy was so friendly and welcoming and the process was really interesting. At the end of the session Pierce had to choose something to do in the life he loves. He wanted to go swimming. So we went home packed a bag and went off to the local pool. Well I can’t begin to describe the elation I felt, we went swimming, we did lengths and we played and we went in the spa pool and the steam room. Most of all no tics, no fits just fun and laughter. The process is a blooming miracle and its only day one. Day twos choice was to go shopping, I did the biggest shop ever as Pierce got to choose all of the food he wanted, I also bought him a nerf gun. Well I have never been so happy in all my life as when my cheeky 13 year old shot me in the neck from the end of the hall way with his nerfgun. I had my cheeky boy back. Day 3 and we couldn’t believe how well things had gone. Pierce and I decided we needed to plan a trip. We booked to go camping the following weekend. I am very happy to be able to tell you that we went camping and we went canoeing and Pierce ran around like a lunatic with his friend and he toasted marshmallows on the camp fire!
Since doing the lightning process and duing the life we love Pierce has been to school every single day, joined young farmers where he has carved pumpkins that he harvested from a field, visited an egg farm and taken part in a quiz night. He is very excited as he is going on a tractor driving course and an engineering course in February. Pierce also plays the drums and has had regular drum lessons. He can stay up way past 8.30pm although he has discovered that mum and dad are quite boring and they don’t have the parties he imagined past 8.30pm. Personal achievements for Pierce are being able to live the life he loves without mums constant help and physical presence. Pierce is able to deal with difficult situations that used to lead to tic attacks and now it’s just life as normal. Pierce has stopped some medication and reduced another by half. All equipment provided by occupational therapy has been returned. We no longer need respite care and we haven’t spoken to a member of his care team other than for advice on stopping medication. Most importantly no tic attacks, no non epileptic seizures minimal tics, Asperger’s what’s that?? Anxiety no thank you!! Pierce is living the life he loves.
A further mail…..
It has been such a fantastic process. I had to leave it a few weeks so I could let it all sink in. Of course it has helped me in so many ways. I realised after sending the email that I had not mentioned how it had helped me. I have gone from struggling to work 20 hours a week due to Pierce being ill to working full time. The love I have for my job has been renewed and I had the confidence to apply to university again. I was accepted on to a course that will enable me to further my career and help me to help others. Outside of work Jon and I are finally realising that we can have a social life. Work was the only break we used to get so the thought of doing something other than work is such a treat. Jon has also got a new job and we feel like life has given us a second chance. 2 months after we got married Pierce became ill, we are able to du fun again. Another huge thing is that I used to du no feelings that I used to think was calm or explosive anger. Laughter was rare. I now laugh lots I’m happy and I don’t get wound up by things that I cannot change. I am living the life I love and Jon is so much happier because Pierce and I are happy.
Pierce has made you a card that he wants to give to you tomorrow. I told him you might not be in and he said that was fine he still wants to deliver it himself.
Thank you so much for all you have done
6 months later Sam writes….
I just had to let you know that Lightening Process has helped me to overcome ‘the fear’. I went to visit a patient today and when I rang the doorbell I could hear dogs barking. It was a lovely sunny day and I ran through the process in my head. Any way not only was it dogs but it was a German Shepard and a small terrier. The 2 breeds of dogs that have bitten me in the past. Any way I didn’t ask for the dogs to be locked up, I got on with my job and even thought the German Shepard looked like a big teddy bear!! This situation would have reduced me to tears in the past. I’m so very proud of myself and I just wanted to say thank you for giving me the skills.
More positive things for me at this time are that I have my lust for life back. I had my hair chopped off ‘funky’ yesterday and I’m me again. I was growing my hair and being blonde to get on. Well that’s what I told myself, I realise that I was just allowing myself to fade in to the background. I don’t need the bright colours to be noticed anymore but I do love a funky hairstyle its part of my personality. I also had my first assessment for my district nurse training today, my assessor told me she could not believe the positive change in me since January and that I had changed from being someone she was concerned about to someone she is excited about. I didn’t realise that getting help for Pierce would have such a positive impact upon my life.
So thank you a million times
PS I found my duck!!