i`m sure there was a documentary on telly a while back with regards to a chap with Tourette`s (feel free to correct me with what he had). As soon as he played the piano ( very well) he was fine, so to speak. It was like the concentration was a switch to the problem he had.
Part 3. Karen is now Adams full time carer. He needs care 24/7. We spend the rest of 2009 learning how to cope and go to many review sessions. He sees the Paediatrician and psychologist around every 4 weeks. School is a nightmare, he dreads going. The school are doing their best and are being very flexible. Adam is really regressing inside himself and dreads seeing people he doesn’t know. His perception is when people look at him they are laughing at him. A good example, after we came out of a session with psychologist, we treated him to Macdonalds. We parked the car and walked inside. I went through the door, looked back and Adam is 5 meters behind us stood still – “were not going inside are we?” he said. Adam has always loved his food and MacD was a favourite, so this was just sad. He didn’t want to go in because people look at him when he makes noises. He has gone from “happy Adam” to angry Adam. We rarely see him smile. I don’t mind admitting that we are struggling to cope. Karen is on anti depressants now and can’t bear to watch him when he is having his severe tics. It’s like watching him being tortured. He struggles to get to sleep at night because of the tics. I have to go into him every night and stroke his head to calm him down. Karen cant do it, she just breaks down. I remember one night after I got him to sleep; I went in the shower and just sobbed. I hadn’t cried for as long as I can remember. I couldn’t show Karen I was upset – I was holding it together for the family – I couldn’t let them know I was struggling. I turned a corner after watching a TV programme on Tourettes. It featured John, the Scotsman we saw on TV years ago with Tourettes, along with a 15 year old who also suffered. In an interview with the 15 year olds dad, it was clear he had been struggling like me. He went to the GP and explained the situation. The GP hit the nail on the head. He said “you are grieving”. You have actually lost the child you knew and you are grieving for them. This may sound strange, but it is true. We struggled through the rest of the year as best we could. Human beings adapt to any situation very well. People comment – how do you cope? The answer is “what choice do you have other than to cope?”. Adam has developed an irrational hatred of his sister now. They can’t be in the same room without him diving around the room, shouting “stupid” at her and lashing out. It is very hard to cope with this side of things. New Year comes and we can’t wait to see the back of that year. Tics tend to change constantly and wax and wain. At the end of January, he develops the worst symptom yet. I get a phone call from Karen at work. She has had a call from school to fetch Adam, he is collapsing every few minutes. I get home and he is in bed. I couldn’t believe what I was seeing. Around every 30 seconds to a minute it was like he was a robot with a switch that turned him off. He would just shut down – everything, including breathing. The longest episode we timed was two and a half minutes. He would just snap out of it and gasp for air as if he had been underwater for as long as he could and filled his lungs. This could happen again within 30 seconds. He was fighting for air. The specialist didn’t know what to do. They hadn’t seen this before. They reassured us that his body wouldn’t let him hold his breath long enough to die. The body has safeguards. He couldn’t go to school any more as these “trances” as we called them happened constantly. We learned to have eyes in the back of our head and a sixth sense when it happened. He could just be walking along, “switch off” and collapse to the floor like a felled tree. He didn’t crumple like someone who was knocked out, his whole body when stiff like a plank and if you didn’t catch him, it was face first into the floor. He did catch us our on occasion and it wasn’t pretty. He did end up face first in his diner on more than one occasion. To be continued.....................
That sounds terrible, the breath holding.. i am a little shocked at reading how bad things have got, but also at karen, i have been depressed before (needing treatment) but i've always been strong for the kids, even when something is terribly upsetting your job is to be there for them.. (just my opinion), i used to get sasha coming home from school in tears because nobody liked her, she would sit in a corner of the playground on her own watching the other children play together and nobody wanted to know.. I cried over this but not in front of her, and i wouldn't not be there to comfort, so i suppose i am not in your situation and my understanding doesn't reach far enough, but dealing with 2 of them and bringing all 4 up on my own, i've just had to suck it up i think and crack on. what about home schooling? i took Ryan out of school and the anxiety he felt lifted noticeably, he was never going to get conventional exam passes anyway, and it was agreed by the local authority that he would benefit from learning at home, i didn't even have to follow the curriculum as his disability is such that he needed to concentrate on life skills before GCSE's .
You cant believe something that seems so harmless on the face of it could be so hurendous!!! its a proper 24/7 job it must be heartwrenching!!!
Hi Mel. I haven't included all the details regarding Karen. At the same time as this happening, she was losing her Dad to Cancer. It all happened at the same time. She was not leaving him to it - she was there all day for him and by the time i got home she had had enough emotionally. She is seriously strong and I couldn't be more proud. It was my bit to take over at night and give her a break after the emotion of the day. If I hadn't of been there, she would have done it. I know your not judging, I am condensing alot of the story. Feel free to make comment though. Yes, we did move onto home schooling and that continues today.
ah you're right, i wasn't judging, my understanding of how this can affect different people is limited.. i coped, but other people who look after the kids dont understand or cope well, and i cant understand why.. its like some people have such single track minds they cannot see anything bigger, or empathise, or use a different approach or understanding, i dont get it.. home schooling is understated, it can make life so much easier, if a kids doesnt like being looked at (like my nephew) you'll never be able to socialise him properly without causing some level of anxiety.. its quite amazing to see how they get on with other ASD kids sometimes though..
my other half i've been with for 2 years, he's the dad of the baby only. He is very understanding and patient, but he doesnt understand it too well. He has been trying to teach her about the road on the school runs... he shows her several times when its safe to cross and when it is not and he always end up saving her as she bolts in front of the nearest car, because he uses the wrong wording.. lol, he hasnt figured this out yet. they take things literally. he doesnt keep patience well enough, if he raises his voice any respect she was starting to gain goes right out of the window again, and we start over... he's getting there though
You just take what life throws at you! It certainly makes you stronger. Adam is the most determined child i have ever met - when he decides he is going to do something there is no stopping him. We are extremely proud of the way he has dealt with his disability. I am certain he will triumph in life with this attitude!
