This is the link to the next vlog on my surgery
https://www.youtube.com/watch?v=UvdODqo9I24
Tuesday 24 October 2017
Wednesday 18 October 2017
Autism research
So yesterday I went to Cambridge University to take part in an autism research project looking at the experience of parenting for people with an autism diagnosis. It was broken down to focus on the following questions.
1. What are the positives of parenting?
I really struggled with this one, I find parenting so hard. For me the positives are having someone to love always and hopefully one or more of them will love you back forever.
2. What are the challenges of parenting?
How long have you got?! There are so many challenges for people with autism.
First and foremost you've got to put someone else first, that's really hard, it means putting yourself in their shoes to some extent to try and work out what they need.
There's a fair chance you'll get a kid on the spectrum so don't count on them being able to tell you what they need. Both having the same thing doesn't mean you'll understand all their struggles especially if they are the opposite to you with regards to sensory input.
It can be hard to focus on the task at hand, I often think about putting on tea then get distracted and then everyone is starving, I forget there's food on and it boils in, gets burnt etc I'm no better organised in the morning than them so if it wasn't for my husband we'd probably be late for school every day.
I can't support them emotionally, this is a big one for me, I probably wouldn't have had kids if I'd known this. There is no room in my brain for other peoples problems, I don't want to hear about so and so at school and after about 60 seconds of being talked at about any subject I've switched off and my mind is elsewhere. I have managed on the whole to find partners who do this really well and this has helped and allowed me to just get the practical stuff done, I'm hot on returning letters, checking for lice, getting teeth brushed, making sure they're not living on junk food etc and laundry, I think I live for laundry. I can't work out where to start with tidying up but I can have your clothes you took off at 8am returned to you washed and dry by lunchtime!
Having to meet other parents, school runs, after school clubs all involve being social and making small talk, the school run in particular really stresses me out, surrounded by loads of people talking, sometimes I try to join in and usually feel I've got it wrong and some days I just try to hide and hope no one will see me.
Noise, kids make a LOT of noise and when you can't stand noise that's a problem.
Kids are demanding, they want answers straight away which I often can't give them especially if there's lots of noise, I try to tell them I'm thinking about said request but they have little patience.
I'm tired, all the time, so just keeping up with them and on top of the tasks of running a house can be overwhelming.
3. How would you describe your approach to parenting?
I used to have a very regimented approach to parenting with the older 4 and now I am probably too laid back. There are some things I'm not prepared to compromise on, being rude and breaking things but I let a lot of their behaviours go because otherwise I would spend my whole life moaning at them.
It's nice if they do well at school but I'm not that bothered about it I would rather they were happy and had a more rounded education including exploring the natural world and travelling and an understanding of other cultures.
4. How would you describe your relationship with your child?
It was suggested the relationship with your child may be dependant on whether they have a diagnosis but that isn't true for me. I have a different relationship with all of them, some I'd say I had a good bond with, others I feel distanced from and some I just can't understand and that makes it hard to build a good relationship. I don't miss my children when I'm away from them which is something I've always felt guilty about so it was comforting to find I'm not alone in that. My children are all quite independent, perhaps because they've learnt they can't rely on me to help them although I am actually amazing at fighting their corner when they need me to. They don't seem to need me and rarely show me any affection.
5. Is there any support that would be useful for autistic parents?
My reply to this was leave us alone. As parents of children on the spectrum we are forced to attend courses to learn about autism so we can learn to change for our child because they cant, not very helpful when you're also autistic. We are forced on parenting courses as we seem clueless how to handle these small strong willed people, we are told we must rein in their behaviour so they don't disturb the outside world and we must help them to change so they can fit in with the "normal" kids.
My friend was telling me the other day that when her son was first diagnosed she went on a course with the national autistic society who said it was highly inappropriate to send parents of autistic children on parenting courses as it suggests it is a parenting failure which of course it is not.
Making us go to support groups to meet other autistic parents is not helpful, we don't like social situations and personally I find people like me quite irritating.
What would be useful is someone to do the things I can't, practical things like cleaning, shopping, playing pretend with the kids. That said I was once offered help from home start which did include those things but I found it to add even more stress having to worry about the state of the house and just knowing someone was coming to the house once a week was horrid.
It was quite an enjoyable experience in the end and I was glad I went.
1. What are the positives of parenting?
I really struggled with this one, I find parenting so hard. For me the positives are having someone to love always and hopefully one or more of them will love you back forever.
2. What are the challenges of parenting?
How long have you got?! There are so many challenges for people with autism.
First and foremost you've got to put someone else first, that's really hard, it means putting yourself in their shoes to some extent to try and work out what they need.
There's a fair chance you'll get a kid on the spectrum so don't count on them being able to tell you what they need. Both having the same thing doesn't mean you'll understand all their struggles especially if they are the opposite to you with regards to sensory input.
It can be hard to focus on the task at hand, I often think about putting on tea then get distracted and then everyone is starving, I forget there's food on and it boils in, gets burnt etc I'm no better organised in the morning than them so if it wasn't for my husband we'd probably be late for school every day.
I can't support them emotionally, this is a big one for me, I probably wouldn't have had kids if I'd known this. There is no room in my brain for other peoples problems, I don't want to hear about so and so at school and after about 60 seconds of being talked at about any subject I've switched off and my mind is elsewhere. I have managed on the whole to find partners who do this really well and this has helped and allowed me to just get the practical stuff done, I'm hot on returning letters, checking for lice, getting teeth brushed, making sure they're not living on junk food etc and laundry, I think I live for laundry. I can't work out where to start with tidying up but I can have your clothes you took off at 8am returned to you washed and dry by lunchtime!
Having to meet other parents, school runs, after school clubs all involve being social and making small talk, the school run in particular really stresses me out, surrounded by loads of people talking, sometimes I try to join in and usually feel I've got it wrong and some days I just try to hide and hope no one will see me.
Noise, kids make a LOT of noise and when you can't stand noise that's a problem.
Kids are demanding, they want answers straight away which I often can't give them especially if there's lots of noise, I try to tell them I'm thinking about said request but they have little patience.
I'm tired, all the time, so just keeping up with them and on top of the tasks of running a house can be overwhelming.
3. How would you describe your approach to parenting?
I used to have a very regimented approach to parenting with the older 4 and now I am probably too laid back. There are some things I'm not prepared to compromise on, being rude and breaking things but I let a lot of their behaviours go because otherwise I would spend my whole life moaning at them.
It's nice if they do well at school but I'm not that bothered about it I would rather they were happy and had a more rounded education including exploring the natural world and travelling and an understanding of other cultures.
4. How would you describe your relationship with your child?
It was suggested the relationship with your child may be dependant on whether they have a diagnosis but that isn't true for me. I have a different relationship with all of them, some I'd say I had a good bond with, others I feel distanced from and some I just can't understand and that makes it hard to build a good relationship. I don't miss my children when I'm away from them which is something I've always felt guilty about so it was comforting to find I'm not alone in that. My children are all quite independent, perhaps because they've learnt they can't rely on me to help them although I am actually amazing at fighting their corner when they need me to. They don't seem to need me and rarely show me any affection.
5. Is there any support that would be useful for autistic parents?
My reply to this was leave us alone. As parents of children on the spectrum we are forced to attend courses to learn about autism so we can learn to change for our child because they cant, not very helpful when you're also autistic. We are forced on parenting courses as we seem clueless how to handle these small strong willed people, we are told we must rein in their behaviour so they don't disturb the outside world and we must help them to change so they can fit in with the "normal" kids.
My friend was telling me the other day that when her son was first diagnosed she went on a course with the national autistic society who said it was highly inappropriate to send parents of autistic children on parenting courses as it suggests it is a parenting failure which of course it is not.
Making us go to support groups to meet other autistic parents is not helpful, we don't like social situations and personally I find people like me quite irritating.
What would be useful is someone to do the things I can't, practical things like cleaning, shopping, playing pretend with the kids. That said I was once offered help from home start which did include those things but I found it to add even more stress having to worry about the state of the house and just knowing someone was coming to the house once a week was horrid.
It was quite an enjoyable experience in the end and I was glad I went.
Pre op vlog
This is the link to my first video logging my tummy tuck journey
https://www.youtube.com/watch?v=bZMbRM5m384
https://www.youtube.com/watch?v=bZMbRM5m384
Thursday 5 October 2017
Tummy Tuck!
Those that have read my post on diastasis recti will know how we've come to this point, if not then I have basically got a massive belly left on my otherwise slim frame which leads to me being asked if I'm pregnant on a fairly frequent basis. I have come to hate what I see in the mirror, nothing I wear can hide it and I avoid leaving the house unless necessary so I don't have to suffer the embarrassment and questions of looking like I do.
My youngest child is 5 at Christmas, I've tried all the advice to lose my belly but even the programmes specifically designed for diastasis recti have not helped either close the gap or the appearance of my tummy.
So when I decided to breed our ragdoll cat I decided there and then that I would use the money for a tummy tuck. Unfortunately she'd need to have 3 litters before I could have it done in the uk so I made the decision to look at having it done abroad.
The first company I contacted told me they only accepted cash?! They then refused to do it when they learned I have autism? The reasoning was that some people with ASD are anatomically different from normal people and the surgeon was worried about how safe it would be to intubate me?! I think this was nonsense I have had plenty of operations and no one has ever suggested such a thing to me before. I think it's more likely that when I listed my medication which includes risperidone they just decided I must be a psycho and didn't want to know. I think it may have been a blessing in disguise really.
I then found another company that seemed a bit more legitimate, they have been used by the tv for makeover programmes and I could find a few genuine reviews from people from the uk who'd used them so I booked my surgery date for 25th October 2017!
I managed to convince my sister to come with me as obviously my husband will need to look after the children and I should be really excited about it.
Instead I find I am absolutely terrified, I am genuinely terrified I'm going to die. I have read all the stories of women who went into cardiac arrest during the operation or died of blood clots or infection a week or so after the operation. I have also googled the thousands of operations that go smoothly but this is giving me little comfort.
Why would I think I would die you might wonder? Well I feel like I'm a fairly unlucky person, if something bad is going to happen it's probably going to happen to me. I have an inability to imagine myself growing old or seeing my youngest 2 grown up so therefore I convince myself it must be because it isn't going to happen. With all the recent terrorist attacks I've become terrified to go anywhere because I can visualise being caught up in an attack and dying. I also have had varicose veins removed from my legs twice and have a large lump behind one knee so I feel I'm a good case for a blood clot. I've had a fair amount of surgery and wonder if this will just be pushing my luck too far?
There's also the overwhelming guilt, what would life be like for my little 2 if I didn't come home? Freya would have no parents, my husband would really struggle to look after them both on his own, would he give her up? And all this because I despise my body?
I have had to come off my medication because they can react with anaesthetic which no doubt isn't helping my mood but I don't know how to get through the next few weeks without being either depressed or in a total panic. Everyone I speak to about it thinks I am being totally ridiculous.
I have told mike where the Halloween and Christmas stuff is and am considering writing the kids letters in case I don't come home.
I've considered cancelling the operation but the thought of spending the rest of my life looking like I'm 7 months pregnant is as bad as the thought of dying.
Just to add to my stress Ryanair have decided to cancel loads of flights after I'd just booked with them so I'm hoping mine won't get cancelled too nearer the time as you can't take out any travel insurance when you're going abroad for surgery!
I am hoping to do some videos of my journey to help anyone else who may be considering this surgery or clinic as there isn't much out there at the moment. Wish me luck!
My youngest child is 5 at Christmas, I've tried all the advice to lose my belly but even the programmes specifically designed for diastasis recti have not helped either close the gap or the appearance of my tummy.
So when I decided to breed our ragdoll cat I decided there and then that I would use the money for a tummy tuck. Unfortunately she'd need to have 3 litters before I could have it done in the uk so I made the decision to look at having it done abroad.
The first company I contacted told me they only accepted cash?! They then refused to do it when they learned I have autism? The reasoning was that some people with ASD are anatomically different from normal people and the surgeon was worried about how safe it would be to intubate me?! I think this was nonsense I have had plenty of operations and no one has ever suggested such a thing to me before. I think it's more likely that when I listed my medication which includes risperidone they just decided I must be a psycho and didn't want to know. I think it may have been a blessing in disguise really.
I then found another company that seemed a bit more legitimate, they have been used by the tv for makeover programmes and I could find a few genuine reviews from people from the uk who'd used them so I booked my surgery date for 25th October 2017!
I managed to convince my sister to come with me as obviously my husband will need to look after the children and I should be really excited about it.
Instead I find I am absolutely terrified, I am genuinely terrified I'm going to die. I have read all the stories of women who went into cardiac arrest during the operation or died of blood clots or infection a week or so after the operation. I have also googled the thousands of operations that go smoothly but this is giving me little comfort.
Why would I think I would die you might wonder? Well I feel like I'm a fairly unlucky person, if something bad is going to happen it's probably going to happen to me. I have an inability to imagine myself growing old or seeing my youngest 2 grown up so therefore I convince myself it must be because it isn't going to happen. With all the recent terrorist attacks I've become terrified to go anywhere because I can visualise being caught up in an attack and dying. I also have had varicose veins removed from my legs twice and have a large lump behind one knee so I feel I'm a good case for a blood clot. I've had a fair amount of surgery and wonder if this will just be pushing my luck too far?
There's also the overwhelming guilt, what would life be like for my little 2 if I didn't come home? Freya would have no parents, my husband would really struggle to look after them both on his own, would he give her up? And all this because I despise my body?
I have had to come off my medication because they can react with anaesthetic which no doubt isn't helping my mood but I don't know how to get through the next few weeks without being either depressed or in a total panic. Everyone I speak to about it thinks I am being totally ridiculous.
I have told mike where the Halloween and Christmas stuff is and am considering writing the kids letters in case I don't come home.
I've considered cancelling the operation but the thought of spending the rest of my life looking like I'm 7 months pregnant is as bad as the thought of dying.
Just to add to my stress Ryanair have decided to cancel loads of flights after I'd just booked with them so I'm hoping mine won't get cancelled too nearer the time as you can't take out any travel insurance when you're going abroad for surgery!
I am hoping to do some videos of my journey to help anyone else who may be considering this surgery or clinic as there isn't much out there at the moment. Wish me luck!
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