I have to say the amount of input I've had from the clinic in Bedford since my diagnosis has been a pleasant surprise. I guess I was expecting to just get sent off with my new "label" and have to get on with it.
I credit a lot of that to my autism nurse who seems to go out of his way to listen to my moans, answer all my odd questions and make me feel I'm not really a bad person, I'm just a person with autism.
I wish I could keep him at home as a constant source of support but I'm sure he needs the break by the time he leaves lol.
I have been on tablets for my stress (my nurse calls it anxiety) for about 5 weeks now and the side effects are not as bad as they were. Initially I was incredibly tired and felt like I had a permanent hangover. It made it hard to carry on as normal as my head was so fuzzy I just couldn't concentrate.
I don't feel much less anxious yet but I have noticed I have been a little calmer with Freya's outbursts and I have had moments of messing about being silly like I used to at home.
I have had weekly home visits from my nurse to put in place a treatment plan and help understand some of the queries I've had. We are both big talkers and usually end up going off at a tangent about something autism related. It has been very helpful to have someone to talk to about things that have happened at home since the diagnosis as I always feel very isolated.
The biggest challenge has been my husbands reaction to the diagnosis. He encouraged me to go through the process and was there at my appointment to support me and help explain my difficulties.
I thought that things would be easier for him now he knows why I do the things I do that drive him mad and leave him dumbfounded but in fact he has been much more critical of me than ever before and has makes daily comments about leaving me.
My nurse has tried to explain to me that he is stressed too but I can't get my head around it. To me I'm the same person I've always been but it seems like now he realises he can't change me he doesn't want me anymore.
I find it hard to justify this as he is disabled and comes with his own set of challenges for me.
I know that he finds my lack of empathy the hardest thing to cope with, he tells me every day that all I care about is myself and I just keep stating that I don't mean to be that way but I can only see how things affect me, I don't know how things affect other people and even when I ask, people are rarely honest in their replies which is greatly unhelpful to an autistic person.
My nurse has recommended me for cbt with a psychotherapist as he said I put u a lot of barriers which prevent me from bringing down my stress levels. I've always said I was my own worst enemy!
I was very sceptical as I've had councillers in the past and not found it helpful but then they didn't know I had aspergers so I'm hoping this time will be different. Our first meeting went ok and she explained we would spend the first few weeks picking apart where I am in my life at the moment and how I got there. I'm really looking forward to that as it's important to me to work out what things are from the aspergers, what is from my past experiences and upbringing and what is just me if anything!
From there we can look at what I would like to work on if anything.
I have felt like since my diagnosis everyone has just been trying to change me, to make me more "normal" with the pills and the analysing everything but I was pleased to hear her say she wasn't there to try and change me just to help me make sense of things.
I was unusually rational and decided that what I want to achieve from the sessions is to work out the bits above about who I am and to feel like it's ok to be myself, warts and all.
I don't want to change, I would like to be less stressed and for others to be more understanding of my difficulties and I feel the 2 things go hand in hand. Until I can be accepted for me I don't think my stress levels will come down as I feel constantly frustrated and misunderstood.
My nurse gave me a sensory checklist for Freya which I completed for myself as well and was amazed how many of my struggles are down to sensory issues. I've always known I don't like noise but I hadn't realised my tolerance levels were so low until my husband pointed it out, he says I'm like a killer bee :/
Through talking to my nurse and rabbiting on about the things I find relaxing he has pointed out to me that they are all low input things, ie: watching wind turbines, watching the washing machine, sitting out in a kayak on the sea with no one else around. I had done a picture years ago during my degree showing me on the sea on my kayak and I had put a thought bubble above me saying "out here I'm free" it's so strange now, all the signs were there but I didn't know. I really can only feel relaxed in complete quiet with no stimulation or natural noises like water, quiet birds etc.
We are going to try and find ways to achieve this without having to drive to the coast with a kayak or install a wind turbine in the garden. As a first step I have bought myself a pair of ear defenders which look quite ridiculous but made lucas's screaming before bed so much more bearable :)
I am great at telling others that you have to look after yourself to be able to look after kids but I'm not much good at following my own advice.
I tried to express my feelings to my nurse by explaining I was still wearing my maternity pants as I felt selfish buying new underwear, I'm larger than I was before Lucas so can't wear my old ones :( he looked highly embarrassed but just laughed at me and suggested I put them on my christmas list for Mike at which point I went into a rant about how men only buy pants I may have worn at 21 but these days I'd like something comfortable not a few bits of lace strung together pretending to be big enough to cover your bits! He was roaring with laughter by this point but I was just stating a fact, I didn't think till I'd left that it probably wasn't the most appropriate converstaion to have with a male nurse but then he's used to autistic people and has probably heard worse! :)
January will bring the start of my involvement with research at Cambridge university and I am really looking forward to that but for now it's my birthday today and I am going to the Harry potter studios later and am super excited about it because I'm such a huge fan of the books and films and I'm just a giant kid still :)
Happy christmas to all my readers lets hope we all survive the maddness :)
Sunday 22 December 2013
Monday 16 December 2013
Freya update.....
I haven't been able to keep up the blogging much recently after starting my meds as I have felt not at all like myself, so thought I'd do a quick update.
Here is a photo of Freya going off to her nursery christmas party this evening, she looks very grown up and a little apprehensive and very beautiful but of course I'm biased!
She was very unsure when we got to nursery as she was expecting me to leave as I usually do and there was an awful lot of people with the parents and kids there. She slowly edged her way off my knee but couldn't settle to watch the magician with the other kids finding safety with her key worker. She was quite happy to go off for food though not surprisingly! She waited for a balloon animal at the end and was give a red one as requested before paying a nervous visit to santa.
She had visited santa a few days ago at the shopping centre which I was very nervous about as we had been advised it usually wasn't a good idea for autistic kids. However it had been Freya's choice, she wanted to see him and I had explained he was a big man in his red suit and she was keen to go in. She does look slightly terrified in the photo but she was quite happy to tell him she wanted a blue scooter for christmas, he thought she said computer so I now have to buy a blue scooter and a computer! Luckily I had picked up a v-tech laptop in the charity shop last month and put it away :)
Since my last blog we have had several visits to the carrot shop as Freya calls it (ikea) she loves trying out the beds, climbing in the kitchen cupboards, playing in the kids rooms etc
We have seen a few movies at the autism friendly screenings with varying success, we saw Frozen yesterday and she was better behaved than last time as there weren't any other kids running around this time. She loved Turbo as it made her think of her snail helper :)
There's been some cycling....
Some exercising.......
Some dressing up.........
and many many rides.....
I am still awaiting the piece of paper with her ASD diagnosis in black & white but have found talking to my own autism nurse very helpful. He provided me with a sensory list to check for Freya and I couldn't believe how many she had. I also used it for myself and was even more surprised how many I had! I have enquired about a private sensory assessment for her and hope this will help me understand how to help her. She seems to be under sensitive to most things and that explains why she is always on the move, she's constantly seeking out the sensory stimulation she needs.
New things we have noticed in the last few months have been a definate decline in her motor skills, she was always a good climber even though her movements were stiff but she has become very clumsy now and usually falls if climbing. I can guarantee at least 2 injury slips from nursery from her 3 days in, one day I had 3 in one day!
She has started making a weird noise more and more often, it's like a one tone groaning and she does it either on and off or for about 5 mins non stop. I can't see a definate pattern with it but she does do it when Lucas is getting attention, when she's been told off and at times of higher anxiety ie: when we're out in town.
In the last few days she has started rejecting anything to eat if it's broken, this can be hard if you've bought chocolate and it's got squashed in the bag so all the bars are broken and especially first thing in the morning when she's sat removing all the broken cheerios from her bowl before you can put the milk in :(
Although the tantrums seem less frequent she has become much more aggressive, Mike and I are now regularly getting hit along with lucas who gets kicked, pushed and hit on a half hourly basis.
On the up side she has started to interact with some of the kids at nursery, still playing her usual games with her rules, but it's progress.
The other day I saw her pretend she had a phone with something that was totally unlike a phone.
She is listening a little bit more when I say no as long as I explain she can have it later etc or offer an acceptable alternative.
Her play therapy has gone so well she doesn't need such regular visits, not exactly a reward for her!
During the last session her nursery nurse showed her a lego farm picture briefly and she had recreated it from memory in about 2 mins with fairly impressive accuracy.
She is very excited about christmas and seems to be understanding the countdown, she loves looking for the numbers on her advent in the morning and she can count backwards so seems to understand it's less sleeps left each day. She is very clear what santa is bringing and god help us all if he doesn't get it right!
I will be updating the blog with my own treatment progress in the next few days for those who are interested :)
Here is a photo of Freya going off to her nursery christmas party this evening, she looks very grown up and a little apprehensive and very beautiful but of course I'm biased!
She was very unsure when we got to nursery as she was expecting me to leave as I usually do and there was an awful lot of people with the parents and kids there. She slowly edged her way off my knee but couldn't settle to watch the magician with the other kids finding safety with her key worker. She was quite happy to go off for food though not surprisingly! She waited for a balloon animal at the end and was give a red one as requested before paying a nervous visit to santa.
She had visited santa a few days ago at the shopping centre which I was very nervous about as we had been advised it usually wasn't a good idea for autistic kids. However it had been Freya's choice, she wanted to see him and I had explained he was a big man in his red suit and she was keen to go in. She does look slightly terrified in the photo but she was quite happy to tell him she wanted a blue scooter for christmas, he thought she said computer so I now have to buy a blue scooter and a computer! Luckily I had picked up a v-tech laptop in the charity shop last month and put it away :)
Since my last blog we have had several visits to the carrot shop as Freya calls it (ikea) she loves trying out the beds, climbing in the kitchen cupboards, playing in the kids rooms etc
We have seen a few movies at the autism friendly screenings with varying success, we saw Frozen yesterday and she was better behaved than last time as there weren't any other kids running around this time. She loved Turbo as it made her think of her snail helper :)
There's been some cycling....
Some exercising.......
Some dressing up.........
and many many rides.....
I am still awaiting the piece of paper with her ASD diagnosis in black & white but have found talking to my own autism nurse very helpful. He provided me with a sensory list to check for Freya and I couldn't believe how many she had. I also used it for myself and was even more surprised how many I had! I have enquired about a private sensory assessment for her and hope this will help me understand how to help her. She seems to be under sensitive to most things and that explains why she is always on the move, she's constantly seeking out the sensory stimulation she needs.
New things we have noticed in the last few months have been a definate decline in her motor skills, she was always a good climber even though her movements were stiff but she has become very clumsy now and usually falls if climbing. I can guarantee at least 2 injury slips from nursery from her 3 days in, one day I had 3 in one day!
She has started making a weird noise more and more often, it's like a one tone groaning and she does it either on and off or for about 5 mins non stop. I can't see a definate pattern with it but she does do it when Lucas is getting attention, when she's been told off and at times of higher anxiety ie: when we're out in town.
In the last few days she has started rejecting anything to eat if it's broken, this can be hard if you've bought chocolate and it's got squashed in the bag so all the bars are broken and especially first thing in the morning when she's sat removing all the broken cheerios from her bowl before you can put the milk in :(
Although the tantrums seem less frequent she has become much more aggressive, Mike and I are now regularly getting hit along with lucas who gets kicked, pushed and hit on a half hourly basis.
On the up side she has started to interact with some of the kids at nursery, still playing her usual games with her rules, but it's progress.
The other day I saw her pretend she had a phone with something that was totally unlike a phone.
She is listening a little bit more when I say no as long as I explain she can have it later etc or offer an acceptable alternative.
Her play therapy has gone so well she doesn't need such regular visits, not exactly a reward for her!
During the last session her nursery nurse showed her a lego farm picture briefly and she had recreated it from memory in about 2 mins with fairly impressive accuracy.
She is very excited about christmas and seems to be understanding the countdown, she loves looking for the numbers on her advent in the morning and she can count backwards so seems to understand it's less sleeps left each day. She is very clear what santa is bringing and god help us all if he doesn't get it right!
I will be updating the blog with my own treatment progress in the next few days for those who are interested :)
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