I need to have a good rant about this housing association!
I haven't spoken much about my husband's condition before, Mike has a tethered spinal cord or occult spinal dysraphism is the proper term.
Basically in layman's terms this means his spinal cord is fused into his spine at one point low down so instead of moving freely up and down as he moves and bends as ours does, his is stuck and as he's grown it has become like an overstretched elastic band.
Due to it's position it caused paralysis in his left leg from the knee down and he has one foot 3 sizes smaller than the other. Fortunately or not I suppose his ankle is fixed so he cannot adjust when going up slopes etc but this does allow him to walk as if he had a peg leg I guess, this itself always impresses me as when my foot goes to sleep I can't walk on it at all, I just collapse to the ground!
The lack of signal into his left leg does of course result in muscle wastage so he must try to exercise the leg to keep enough muscle to walk.
The stretched cord causes him constant pain, yes constant, unless he's lying down he's in a lot of pain, this ranges from his lower back, his knee and more often recently in his neck. You wouldn't know most of the time, he doesn't like to complain about it and usually just carries on until I can see it in his eyes and insist he takes some pain killers. He should be taking 8 a day and they're very strong but he refuses to take them unless he can't carry on because he says if he becomes reliant on them and the pain gets worse the next drug up is morphine and where does he go from there?
He started getting the pain when he was a toddler but it wasn't until he was 10 that a diagnosis was made after having a lumber puncture. It was considered too risky to try to operate.
The lack of feeling causes problems with incontinence and may eventually cause his reproductive organs to stop working.
This is a degenerative condition due to the continued stretching of the cord, Mike was advised by a top specialist that by the time he was 40 the cord would likely have snapped and he would be paralysed from the waist down, he's now 44.
To his credit Mike worked hard in his younger years, he had his own business and made enough money to live a very comfortable lifestyle owning more than one house and allowing him to move to France for a time.
Unfortunately his health took a sudden decline and he was unable to continue working, he basically lost everything, his wife, unable to cope with the decline in lifestyle, left him with 2 toddlers to look after while she found a financial replacement. The sudden lack of mobility coupled with the loss of his wife and daughter plunged him into depression and he suffered a nervous breakdown, this caused him to gain a lot of weight which in turn hindered his mobility further.
Mike lost the ability to walk and was wheelchair bound, homeless and broke.
With the help of a carer he was eventually given a fully adapted home, he worked damn hard to control his eating and push through the pain to exercise to lose the weight and attended physio to learn to walk again.
He slowly fought his way back and began to regain some of the confidence he had lost.
It is perhaps understandable then that when it came to leaving his home to marry me he had his reservations, my home wasn't suitable for him, I already had 5 kids running round leaving loads of mess for him to fall over and then there was that nagging doubt that I may not stand by him if his health took a further downturn.
We waited a long time to fix the housing, huge amounts of assessments from OT's, endless paperwork and red tape to try to secure the money to adapt the property. We ended up having to move the family to a different town to a house that could be adapted and even then it took another 18 months before the work started. It was an awful 8 weeks, I found it incredibly stressful having workmen in the house every day making horrendous amounts of noise but in the end it was done and we now have a house that is adapted for him, he doesn't have to go upstairs and if he needs to use his wheelchair he can.
Well that's the idea.....
Enter Aragon Housing Association.....
When we moved into the property it hadn't been touched in about 30 years, it was thickly stained with nicotine, it stank, even the woodwork stank. We hadn't been in long when the upstairs wetroom began leaking through into the lounge. In total we had them out 5 times about it, they left it until the ceiling fell down before bothering to come and look and every man that came thought it was a different problem, they replaced the trap twice and redid the floor 3 times before it stopped. Then the sink began leaking, the ceiling fell down in the hall before they came and looked at that. 2 of the bedrooms had massive sections of concrete sticking out past the wall level but they didn't think that was a problem, or the wires hanging out of wall that hadn't been plastered properly, they suggested I paper over it. The back of the garden had huge amounts of broken glass and scrap metal where someone had been dumping in it, on complaining that I has 2 autistic children who didn't have any sense of danger I was told that the garden was big enough not to use that bit but they weren't going to put up any kind of divide to keep the kids safe, one lady told me if people are going to dump crap in your garden they're going to dump crap, nothing you can do about it! The people doing it were also their tenants?!
We were so broke from the move we couldn't afford to pay someone to put fencing up ourselves.
We have since spent so much money improving the house, any spare cash we've had has gone on replacing all the woodwork, decorating, laying flooring, we added a bath upstairs and re tiled and replaced the suite, we replaced the kitchen to make better use of the small space, I have a friend who's a builder in case you're wondering how we've done it all!
Let's not forget also the £60,000 the council paid to add the extension for Mike!
So as far as Aragon are concerned they've gone from having a run down 3 bed property to a 4 bed fully disabled adapted property and it's cost them nothing.
You would think therefore that they could and would want to maintain it, however for the 3rd time since the work was finished we are unable to use our front door, it keeps dropping and we cannot get in or out.
On reporting it again I have been told that it's not an emergency as we have a back door we can use.
I explained that my husband is disabled and the ground between the back door and the front of the house is very uneven with a big man hole cover that sticks up and it is difficult for him to safely negotiate, there is a small gap between the house and the concrete washing post and a small drop the other side of it, my point really being that if he needs to use his wheelchair he can't which kind of undoes why we have had so much help to adapt the house in the first place. If it was considered that he could just manage without the adaptions we wouldn't have been given them so to say oh well you'll just have to manage till we can be bothered to come and look at it just makes me so mad, they seem to totally miss the point that not being able to get yourself about safely on your own is degrading and frustrating and painful and potentially dangerous, I'd like to see them hobble across there with one leg and in pain and see if they think it's a problem then!
It's been a similar story with the gas meter which is conveniently located in the back corner of a cupboard in the kitchen, I find it almost impossible to get myself in there to top up the meter and cannot reach the gas turn off lever, and Mike certainly cannot do it. There have been a number of times that I've been at work and come home to find him shivering under a blanket because the gas has run out and there's nothing he can do to get it back on. If I was a better wife I'd find time to check it before I leave, but in reality life is chaotic with Freya and Lucas and I'm lucky if I get time to eat before work. We asked for it to be moved in February but are still waiting.
It's really tough to get help when people can see you're struggling but seemingly impossible when you have a condition that isn't visible. Mike's condition has meant that his upper body is huge to compensate for his weak lower back and left side, so when he's got trousers on he looks like a pretty healthy strapping bloke, his hobble is less significant on a good day and if he doesn't stumble on getting out of the car after we've parked somewhere we've had people confront him about parking in a disabled space even though he's clearly displaying a badge. If I had a pound for every person that has told him or me that we or the kids don't look disabled I'd be a millionaire, I've lost hope that there will ever be a time when people get it.
He doesn't get mad about it like me he says he's used to the judgement and the ignorance but why should he have to be? Why should he have to justify himself and explain his difficulties? I'm sure he wishes more than anything that he wasn't disabled, that he hadn't had to spend his entire life in pain and that we could park at the far end of the car park and walk further to the shop. He fights so hard against letting it beat him, he walks as much as he can manage and some days it wins and he can't even get out of bed but the rest of the time he just gets on with life, does things he enjoys and can manage and looks after us slightly high maintenance autistic people. He drives me crazy with his stubbornness but I'm super proud of how far he's come and I wish the rest of the world would give him a break.
Wednesday, 1 June 2016
Tuesday, 8 March 2016
Shopping causes meltdowns!
I have just got in from a trip to Tesco and am still in a complete state due to someone elses child screaming at high pitch non stop round the shop!
I see this is in discussion today on facebook about a mum with her child in John Lewis being asked to leave because her child was having a tantrum, and much is being said about how we should all be more tolerant and non judgmental of such events.
I feel more than qualified to comment on this subject as we had many occasions when Freya screamed her head off while we were out, usually while shopping, and while I don't feel we should have kept her locked up at home during this period I also think you've got to take some responsibility for your child's behaviour and need to consider the rest of the world in dealing with these things.
It can be very isolating having a child who behaves this way and yes people always have something to say about it be it verbally or the way they look at you and there is always judgement about your parenting, it's just human nature unfortunately, but we are in fact not isolated and I have always tried not to let my children's behaviour disturb other people, I just believe it's part of being a good neighbour and citizen to not annoy others.
I fully appreciate that children particularly those on the autistic spectrum can't always help their behaviour but if you know your child can't cope with shopping why would you take them?
Shopping really is very hard for some of us, I hate it still and some days I don't feel able to do it and so I don't, with so much available online these days it's fairly easy to avoid actual shopping.
There seems to be this lack of connection that autistic children grow into autistic adults and I can only assume we're meant to have been cured of our issues with shopping or anything else that bothers us as kids by then?
Well I can assure you nothing has changed, in fact I find it much more difficult now than I did when I was smaller and had someone else in control of taking me, I didn't need to make my own decisions on what to buy, put together meals, work out what I could afford, negotiate crammed isles with blaring lights and noisy beepers going off while often accompanied by 2 small people who also don't like shopping!
My brain is always a mess of thoughts and confusion and add to this the sensory nightmare of supermarket shopping and it goes without saying that I couldn't take the screaming child on top.
As an adult I'm expected to be in control of my autism and to just cope but in reality I really don't have much control over it all. My best option is to remove myself from the situation asap but in this case I had a basket of food and 2 little people running in different directions and by the time I got out I was not far from a meltdown myself. My head was screaming, my ears were killing, even navigating the way home seemed like too much to manage.
It's been nearly 2 hours since I got home and I'm still highly stressed despite taking extra medication as soon as I got in. I have to work this evening and am panicking I'm still going to be struggling by then :(
So I suppose my opinion on both screaming matters of the day is I don't think the woman in John Lewis should have been asked to leave but I do think she should have taken her child out on her own accord as with the woman in Tesco. I wasn't judging her parenting nor do I think either child was just being naughty but as parents we know our kids and we find ways to deal with these things even if that means we can't go shopping with them in tow.
For anyone reading who thinks that's easy for me to say as I had my husband to pick up the pieces when he got home, I was also a single parent for 7 years and juggled 4 small girls round town, two who also had screaming tantrums and I always took them home if they started and god knows I am far from the coping parent!
I see this is in discussion today on facebook about a mum with her child in John Lewis being asked to leave because her child was having a tantrum, and much is being said about how we should all be more tolerant and non judgmental of such events.
I feel more than qualified to comment on this subject as we had many occasions when Freya screamed her head off while we were out, usually while shopping, and while I don't feel we should have kept her locked up at home during this period I also think you've got to take some responsibility for your child's behaviour and need to consider the rest of the world in dealing with these things.
It can be very isolating having a child who behaves this way and yes people always have something to say about it be it verbally or the way they look at you and there is always judgement about your parenting, it's just human nature unfortunately, but we are in fact not isolated and I have always tried not to let my children's behaviour disturb other people, I just believe it's part of being a good neighbour and citizen to not annoy others.
I fully appreciate that children particularly those on the autistic spectrum can't always help their behaviour but if you know your child can't cope with shopping why would you take them?
Shopping really is very hard for some of us, I hate it still and some days I don't feel able to do it and so I don't, with so much available online these days it's fairly easy to avoid actual shopping.
There seems to be this lack of connection that autistic children grow into autistic adults and I can only assume we're meant to have been cured of our issues with shopping or anything else that bothers us as kids by then?
Well I can assure you nothing has changed, in fact I find it much more difficult now than I did when I was smaller and had someone else in control of taking me, I didn't need to make my own decisions on what to buy, put together meals, work out what I could afford, negotiate crammed isles with blaring lights and noisy beepers going off while often accompanied by 2 small people who also don't like shopping!
My brain is always a mess of thoughts and confusion and add to this the sensory nightmare of supermarket shopping and it goes without saying that I couldn't take the screaming child on top.
As an adult I'm expected to be in control of my autism and to just cope but in reality I really don't have much control over it all. My best option is to remove myself from the situation asap but in this case I had a basket of food and 2 little people running in different directions and by the time I got out I was not far from a meltdown myself. My head was screaming, my ears were killing, even navigating the way home seemed like too much to manage.
It's been nearly 2 hours since I got home and I'm still highly stressed despite taking extra medication as soon as I got in. I have to work this evening and am panicking I'm still going to be struggling by then :(
So I suppose my opinion on both screaming matters of the day is I don't think the woman in John Lewis should have been asked to leave but I do think she should have taken her child out on her own accord as with the woman in Tesco. I wasn't judging her parenting nor do I think either child was just being naughty but as parents we know our kids and we find ways to deal with these things even if that means we can't go shopping with them in tow.
For anyone reading who thinks that's easy for me to say as I had my husband to pick up the pieces when he got home, I was also a single parent for 7 years and juggled 4 small girls round town, two who also had screaming tantrums and I always took them home if they started and god knows I am far from the coping parent!
Monday, 7 March 2016
Autism and Pooh!
Now for those who might think this is a nice post about Winnie the pooh I'm sorry to disappoint you and you may wish to stop reading as I am indeed going to talk about actual human pooh!
I don't pretend to understand the connection between autistic children and pooh but there seems to be one never the less.
My son Lucas is now 3 and has been under observation for about 18 months now with a view to also having autism and at every appointment we are asked if he smears pooh, it seems to have become part of the diagnostic criteria at our clinic!
Each time we reply yes he's still smearing pooh given half a chance and I know it's something Freya did too as did one of my older girls. They tell me they just like the feel of it, the same as smearing other things but it's just so gross and really does make me feel that I'm raising animals rather than sweet little children.
We have recently toilet trained Lucas but for some reason he still likes to strip off at regular intervals throughout the day and squat and wee on the floor and often to do a pooh too. If you're very attentive you can sometimes catch him but more often than not you catch him with no pants on and then have to go on a search of the pooh.
I know he's never liked poohing on the toilet for whatever reason but he really seems to delight in doing it on the floor :(
Things reached a disturbing level yesterday when he came running in pant-less and I couldn't find the pooh, I followed my nose and to my disbelief he had filled up one of my ugg boots with pooh and put his pants in the other one!
I was further astonished that my husband found this hilarious?!
I don't know how to stop this behaviour as he seems to just find it funny when I tell him off so I'm clinging on to the hope that he will grow out of it :/
I don't pretend to understand the connection between autistic children and pooh but there seems to be one never the less.
My son Lucas is now 3 and has been under observation for about 18 months now with a view to also having autism and at every appointment we are asked if he smears pooh, it seems to have become part of the diagnostic criteria at our clinic!
Each time we reply yes he's still smearing pooh given half a chance and I know it's something Freya did too as did one of my older girls. They tell me they just like the feel of it, the same as smearing other things but it's just so gross and really does make me feel that I'm raising animals rather than sweet little children.
We have recently toilet trained Lucas but for some reason he still likes to strip off at regular intervals throughout the day and squat and wee on the floor and often to do a pooh too. If you're very attentive you can sometimes catch him but more often than not you catch him with no pants on and then have to go on a search of the pooh.
I know he's never liked poohing on the toilet for whatever reason but he really seems to delight in doing it on the floor :(
Things reached a disturbing level yesterday when he came running in pant-less and I couldn't find the pooh, I followed my nose and to my disbelief he had filled up one of my ugg boots with pooh and put his pants in the other one!
I was further astonished that my husband found this hilarious?!
I don't know how to stop this behaviour as he seems to just find it funny when I tell him off so I'm clinging on to the hope that he will grow out of it :/
Finding out your child has a personality disorder
I've never posted much about my other children on here but I do have 5 others besides Freya and they all come with their own set of challenges, this week I found out my 17 year old has borderline personality disorder.
We've known for a while that something wasn't quite right with her but between teenagers hiding things as they do and my own oblivion to others problems I guess it's maybe no surprise that it's taken this long to get to this point.
After being referred to the camh crisis team last year she was seen by a psychiatrist who decided she had attachment disorder which we never felt fitted her at all and she refused to go back and see him again, she was then passed about various people before they just dropped her and all support stopped.
They seemed a little surprised when we had an incident with Freya ending up in hospital after getting hold of some medicines (which has led to months of them investigating me?!) that Chloe was still having issues, maybe they thought it was just a phase?
I was aware that her mood had been low and her self esteem wasn't great but I'd felt she had started exhibiting more and more signs of Aspergers and I insisted she was referred to my psychiatrist at the adult autism clinic.
She had an extensive assessment with 3 psychiatrists and they concluded that while she does display some symptoms which could be conceived as autism, the drivers for her behaviour are very different from those of someone with ASD, for example while I am often oblivious of or confused by my emotions Chloe is very in touch with hers and feels things much more than your average person.
I didn't know much about the condition but remembered watching a documentary on mental health on tv where a guy with personality disorder kept trying to commit suicide.
The drs seemed quite concerned that she get treatment asap for this reason, apparently they don't need something bad to happen to feel suicidal like most of us would
I think I'm still digesting it all really, I keep thinking back to when she was small to see if I missed something and I feel like I've neglected her in some way, she was largely a happy child and probably the one I worried least about as she always just got on with life.
We've had some difficult times with her for the last few years and I've really struggled to understand her behaviour even in terms of the "normal teenage things" and it has seemed like the only option was going to be to have her move out but I do feel now that I want to try and support her through her therapy and hope that we can both learn more about this condition and how I can help her feel more secure and able to ask for help when she needs it.
I would love to hear from anyone who has been through this either themselves or with their child, I feel a bit lost at sea at the moment :/
We've known for a while that something wasn't quite right with her but between teenagers hiding things as they do and my own oblivion to others problems I guess it's maybe no surprise that it's taken this long to get to this point.
After being referred to the camh crisis team last year she was seen by a psychiatrist who decided she had attachment disorder which we never felt fitted her at all and she refused to go back and see him again, she was then passed about various people before they just dropped her and all support stopped.
They seemed a little surprised when we had an incident with Freya ending up in hospital after getting hold of some medicines (which has led to months of them investigating me?!) that Chloe was still having issues, maybe they thought it was just a phase?
I was aware that her mood had been low and her self esteem wasn't great but I'd felt she had started exhibiting more and more signs of Aspergers and I insisted she was referred to my psychiatrist at the adult autism clinic.
She had an extensive assessment with 3 psychiatrists and they concluded that while she does display some symptoms which could be conceived as autism, the drivers for her behaviour are very different from those of someone with ASD, for example while I am often oblivious of or confused by my emotions Chloe is very in touch with hers and feels things much more than your average person.
I didn't know much about the condition but remembered watching a documentary on mental health on tv where a guy with personality disorder kept trying to commit suicide.
The drs seemed quite concerned that she get treatment asap for this reason, apparently they don't need something bad to happen to feel suicidal like most of us would
I think I'm still digesting it all really, I keep thinking back to when she was small to see if I missed something and I feel like I've neglected her in some way, she was largely a happy child and probably the one I worried least about as she always just got on with life.
We've had some difficult times with her for the last few years and I've really struggled to understand her behaviour even in terms of the "normal teenage things" and it has seemed like the only option was going to be to have her move out but I do feel now that I want to try and support her through her therapy and hope that we can both learn more about this condition and how I can help her feel more secure and able to ask for help when she needs it.
I would love to hear from anyone who has been through this either themselves or with their child, I feel a bit lost at sea at the moment :/
Tuesday, 17 November 2015
Holding it together
I was so proud of Freya last night and wanted to share to show how's she's growing and changing :)
I decided to pop to the post office straight from school to post a parcel for my husband.
Freya came out of school noticeably excitable, jumping and waving her arms about and being very noisy, this continued up the road and as we were nearing the post office door she managed to twist her ankle with jumping about and was screaming and crying. After comforting her (which is always a challenge for me as I always feel if she hadn't been messing about it wouldn't have happened and I can't stand her flinging herself all over me dribbling and screaming) she managed to hobble into the post office.
There was a queue as usual and I was trying hard myself not to get stressed about what might occur while we were waiting. Freya was babbling about them not doing the right sweets in here so I sent her off to choose something that wasn't a kinder egg and not too big. (It's just my personal opinion that kinder eggs are stupidly expensive for a tiny amount of chocolate and a rubbish toy that they're likely to break or choke on)
She came back with a little packet of chewy sweets and did her big hopeful eye thing while asking if they were ok. I said yes and told her she'd have to wait until we'd paid to open them.
There were still 3 people in front of us and she was getting restless again so I tried to distract her with getting her to try and read the cards. This worked to a degree but she can be a bit rough and I was worried she would bend the cards, I was also stressing about how loud she was being as we now had about 5 people behind us in the queue as well.
We talked about the get well cards and she asked to get one for grandma who has been feeling poorly, I explained I didn't have many pennies today but she could make one and grandma would probably like that more. She replied "what if we sneak one out without paying and take it home and copy it then bring it back? Would that be ok?" I now felt very awkward that I had to explain no that was still stealing and not ok with an audience of listeners close by and she went on to ask what would happen and if a policeman would take her away for pushing someone at school and what if it was an accident etc :/
By the time it was our turn I was feeling slightly frazzled and Freya was bouncing up and down on the counter jabbering away to the lady who was trying to serve me. We had to go to the other counter to pay so she excitedly put her sweets up to be beeped. I had only got £3 left in the bank so needed to pay on my card and it was then that the lady informed me the card machine wasn't working! I had absolutely no change in my purse and had to tell Freya that after holding the chewy sweets for about 15 minutes and waiting so patiently that she now had to leave them there :(
I was fully aware how hard she was going to take this and despite the opinion that we can't understand others feelings I often feel them too much and can't cope and end up in a worse state myself.
Her little face went bright red, her eyes welled to breaking point with tears, she fixed her eyes on mine and squeezed my hand and said "that's funny mummy isn't it?" "it's funny isn't it?" "isn't it mummy?" I could see her breathing faltering as she repeated it over and over. Clearly she didn't think it was funny and she was trying so hard to pretend it was ok I could have burst into tears myself.
The lady apologised but I was too busy trying to plan what was best to say I think I ignored her, I didn't want to over sympathise and make her cry nor did I want to brush off how she was feeling like it wasn't important. I squeezed her hand tight and said "no it's not funny Freya but we can go to another shop and get you the same sweets" before departing quickly from the shop.
Once outside we walked quickly and I told her she was a very good girl and asked what she'd like to get from the other shop. The post office don't do lollies which are her favourite and the other shop does so I was hoping she would have that to look forward to on the walk.
By the time we got to the other shop she was ok and chose herself another packet of chewy sweets in the end, not exactly the same and one she hadn't had before so that was another achievement and she munched them all the way home.
Disappointments are hard for any child but much harder for a child with autism to understand and she could so easily have had a meltdown about that lack of understanding and the overwhelming of her emotions but she didn't, she tried to control how she felt by repeating something over and over (she does this a lot, I'm not sure why, maybe to help her process it or to drown out something sensory as it's often when we're out and about) and she managed to calm herself. I was so proud of her I could have smothered her in kisses and I even remembered to tell her :)
I decided to pop to the post office straight from school to post a parcel for my husband.
Freya came out of school noticeably excitable, jumping and waving her arms about and being very noisy, this continued up the road and as we were nearing the post office door she managed to twist her ankle with jumping about and was screaming and crying. After comforting her (which is always a challenge for me as I always feel if she hadn't been messing about it wouldn't have happened and I can't stand her flinging herself all over me dribbling and screaming) she managed to hobble into the post office.
There was a queue as usual and I was trying hard myself not to get stressed about what might occur while we were waiting. Freya was babbling about them not doing the right sweets in here so I sent her off to choose something that wasn't a kinder egg and not too big. (It's just my personal opinion that kinder eggs are stupidly expensive for a tiny amount of chocolate and a rubbish toy that they're likely to break or choke on)
She came back with a little packet of chewy sweets and did her big hopeful eye thing while asking if they were ok. I said yes and told her she'd have to wait until we'd paid to open them.
There were still 3 people in front of us and she was getting restless again so I tried to distract her with getting her to try and read the cards. This worked to a degree but she can be a bit rough and I was worried she would bend the cards, I was also stressing about how loud she was being as we now had about 5 people behind us in the queue as well.
We talked about the get well cards and she asked to get one for grandma who has been feeling poorly, I explained I didn't have many pennies today but she could make one and grandma would probably like that more. She replied "what if we sneak one out without paying and take it home and copy it then bring it back? Would that be ok?" I now felt very awkward that I had to explain no that was still stealing and not ok with an audience of listeners close by and she went on to ask what would happen and if a policeman would take her away for pushing someone at school and what if it was an accident etc :/
By the time it was our turn I was feeling slightly frazzled and Freya was bouncing up and down on the counter jabbering away to the lady who was trying to serve me. We had to go to the other counter to pay so she excitedly put her sweets up to be beeped. I had only got £3 left in the bank so needed to pay on my card and it was then that the lady informed me the card machine wasn't working! I had absolutely no change in my purse and had to tell Freya that after holding the chewy sweets for about 15 minutes and waiting so patiently that she now had to leave them there :(
I was fully aware how hard she was going to take this and despite the opinion that we can't understand others feelings I often feel them too much and can't cope and end up in a worse state myself.
Her little face went bright red, her eyes welled to breaking point with tears, she fixed her eyes on mine and squeezed my hand and said "that's funny mummy isn't it?" "it's funny isn't it?" "isn't it mummy?" I could see her breathing faltering as she repeated it over and over. Clearly she didn't think it was funny and she was trying so hard to pretend it was ok I could have burst into tears myself.
The lady apologised but I was too busy trying to plan what was best to say I think I ignored her, I didn't want to over sympathise and make her cry nor did I want to brush off how she was feeling like it wasn't important. I squeezed her hand tight and said "no it's not funny Freya but we can go to another shop and get you the same sweets" before departing quickly from the shop.
Once outside we walked quickly and I told her she was a very good girl and asked what she'd like to get from the other shop. The post office don't do lollies which are her favourite and the other shop does so I was hoping she would have that to look forward to on the walk.
By the time we got to the other shop she was ok and chose herself another packet of chewy sweets in the end, not exactly the same and one she hadn't had before so that was another achievement and she munched them all the way home.
Disappointments are hard for any child but much harder for a child with autism to understand and she could so easily have had a meltdown about that lack of understanding and the overwhelming of her emotions but she didn't, she tried to control how she felt by repeating something over and over (she does this a lot, I'm not sure why, maybe to help her process it or to drown out something sensory as it's often when we're out and about) and she managed to calm herself. I was so proud of her I could have smothered her in kisses and I even remembered to tell her :)
Friday, 28 August 2015
Fit for work? It depends on the job!
Those of you who follow my blog will know that last year I started working for Waitrose after a long break from employment bringing up the kids and doing my degree.
I managed quite well at the job, I got stressed now and again and ended up having to confess I had Aspergers to explain why I'd been virtually in tears the one day they didn't send me for my lunch break within 45mins of the usual time!
After that chat with my manager she made sure I was always told at the start of my shift roughly what time I'd be going for my break :)
It's not the first job I'd had and I didn't think getting a job would be as hard as it was.
I have noted over the years that I'm never the first person to get the job I apply for, I am the next on the list when their first choice turns out to be unreliable or doesn't like the job etc
That used to annoy me but since my diagnosis and my acceptance that on face value I can't always hold my own and can be a tad shy and awkward I've come to see it as proof of my reliable nature.
The first job I had was at 13, I worked in the local newsagent which was very small but I mainly worked alone and had a variety of little jobs to do to keep me busy. The owner was nice and made me lunch and I had customers who came in and bought me chocolate or sweets. I worked there until I fell pregnant at 17 when she felt it best I leave. I think I did well at this job.
The next job I had was at a train station in the newsagent where I worked from 6am with all the commuters rushing through throwing their change at the counter for you to rummage through the sweets to find or screaming at you for not having their paper. You would think this would have been too stressful for someone with my high anxiety levels but I still did ok. I put this completely down to the young lady I worked with. She would come in singing at 5.45am and rarely lost that smile and happy outlook which made it pretty hard to get grumpy. She had been doing the job a few years and made me feel very safe and looked after. She later became a good friend of mine :) I left this job when I had my first baby, I lost the first one in case you're confused.
When my daughter was 6 months I got a job at a small video rental store in the evenings. It was a warm friendly place with regular customers and I really enjoyed organising the videos by number and of course getting to watch all the new releases. I remember them releasing the first x files box set :)
I worked here for a few years and the only problem I remember was getting along with some of the other staff. My manager was sacked for sexual harassment and I had been oblivious to the fact that most of what he said was highly inappropriate and unprofessional.
The only work I did after that was volunteering at the girls school for lunch duties and listening to reading etc
When I was working at Waitrose I had no idea how well I was being treated and I did get stressed with the noise levels in the store sometimes especially if I was on the kiosk near the cafe with the coffee machine going. I did forget to make eye contact with the customers sometimes. I tend to go bright red when people talk to me and this was commented on a few times. One of the toughest things was fighting the tiredness. I find concentrating on getting things right for the job and all the social interactions incredibly tiring. After an hour with my therapist I am fit for nothing but sleep because it's so incredibly draining engaging so intensely for an hour and challenging your thoughts and beliefs it totally knocks me for 6. Therefore working a 6 hour shift is really draining for me, I'm not lazy I'm just so overwhelmed by all the sensory input and all the thinking involved in trying to appear as though I'm like everyone else.
You may wonder then why I decide to leave Waitrose for a job elsewhere doing a different role? In simple terms I wanted to be closer to home. Getting to Waitrose involved an hour and a half's travelling if I had to get myself there. This included a train journey, a long walk and a bus ride, all of which cause me a lot of anxiety. You wouldn't know if you saw me sat on the train station that I was having constant visions of throwing myself under a train and when the fast trains go flying through I'm screaming internally with terror. You wouldn't see how uncomfortable I am sat on the bus with people talking and listening to music and smelling weird. I internalise all this anxiety and at some point it comes out in the form of a melt down or more often just me being snappy and mean to my family. I just look miserable from the outside (so I've often been told) like I'm a moody cow, which I guess I am :) but really I'm just frightened, terrified by people and their unpredictable natures, deafened by noises, blinded by lights, tortured by the visions in my head and confused and stressed by the constant chatter in my head trying to make sense of it all.
Maybe I should not have been surprised therefore that my new job did not go well. My first impression on visiting was 'wow, that's a small space behind the counter and there's about 4 girls trying to squeeze past each other while bustling about busy with orders' you see my instincts were spot on that this may be an issue for me.
The first day was truly awful, 8 hours on my feet rushing orders back and forth, carrying heavy trays, tying to learn how to use the coffee machine, (which was less annoying when making the noise myself?!) being told different ways to do things by different people, 30 mins for lunch when you're not sure how to get to the canteen meaning wolfing down half your dinner before running back. I genuinely thought I was going to break or die. Every part of my body was in agony by the time I finished and my head felt like it was going to explode.
I told myself my body would get used to the work but my head was a different matter.
The next shift was no better, there was no let up in the pace, no chance for a sip of water or a loo break. I had a 6 hour shift that day and was told I was not entitled to a break. I don't do well when I haven't eaten and I knew this would only add to my problems.
The other girls seemed impatient with me, I was always in the way, I had to be reminded over and over to check for tables that needed clearing. I couldn't get the coffee right. It was hot, I had such a bad pain in one foot I could barely walk.
The next shift was the day after so I'd had no time to recover, I tried to escape into the kitchen to wash dishes where at least I could focus on one task and was not being constantly touched and shunted to one side while being given several different jobs in the space of 5 minutes.
I struggled to remember all the rules while serving, I apologised countless times for getting them wrong. I tried to remain friendly and upbeat but it was all getting too much. I tried to ask one of the others about an order and was ignored twice then told to do something else but I couldn't, I'd been asked about an order by a customer and I needed to answer her before I could do something else.
I snapped both internally and literally, I couldn't wait to get out and I knew I couldn't go back.
I felt like a mental patient there, like I had no grasp on anything in my life. Even when I got home I couldn't function, it was as if I'd been physically assaulted and mentally tortured for days. I felt ill, I felt really disabled and I felt as though I'd never be able to do a job again.
It took a while and a reminder from my husband that I could manage at work, I'd managed at Waitrose. I'd still struggled with some things and some days I'd been very stressed and taken extra medication and then had trouble staying awake, but on the whole I'd done ok. Both my husband and therapist have said I coped better in general when I was working there, maybe having the time out from the stress of family life or having something for me to focus on that I felt I was doing well with? I don't know what it was and I don't know if I was coping better. When you're in a constant state of high anxiety it's hard to notice the small moments when you smiled, relaxed for a millisecond, to feel proud that you helped someone or that you managed a situation well.
Anxiety is huge for me, every minute of the day I am on high alert, my jaw is clenched, my head is running overtime processing and making up nonsense that just adds further to my anxiety.
I have sometimes felt like I should have achieved more given that I have a degree and I know many people think working in a shop is a sad and somewhat pathetic job but now I see what an achievement this was for me. I may be over qualified in academic terms but I was born with restrictions and I have struggled for nearly 40 years to understand why I have these. You can't see them from the outside but they're very real for me.
There is a lot of talk right now about getting disabled people into work and especially those with mental problems and it frightens me. I was lucky to find jobs where I could manage my anxiety, where I had people willing and able to make adjustments for me even before I knew I needed them.
Not everyone will be this lucky and a bad experience like I had could totally break someone who is forced to remain at that job either by the system or because they need to feed themselves.
If I had had to stay in that job it would have broken me, I would have had a nervous breakdown. I am lucky that I am in a position where I could walk away and with a hopeful heart re-apply for my job at Waitrose :)
I managed quite well at the job, I got stressed now and again and ended up having to confess I had Aspergers to explain why I'd been virtually in tears the one day they didn't send me for my lunch break within 45mins of the usual time!
After that chat with my manager she made sure I was always told at the start of my shift roughly what time I'd be going for my break :)
It's not the first job I'd had and I didn't think getting a job would be as hard as it was.
I have noted over the years that I'm never the first person to get the job I apply for, I am the next on the list when their first choice turns out to be unreliable or doesn't like the job etc
That used to annoy me but since my diagnosis and my acceptance that on face value I can't always hold my own and can be a tad shy and awkward I've come to see it as proof of my reliable nature.
The first job I had was at 13, I worked in the local newsagent which was very small but I mainly worked alone and had a variety of little jobs to do to keep me busy. The owner was nice and made me lunch and I had customers who came in and bought me chocolate or sweets. I worked there until I fell pregnant at 17 when she felt it best I leave. I think I did well at this job.
The next job I had was at a train station in the newsagent where I worked from 6am with all the commuters rushing through throwing their change at the counter for you to rummage through the sweets to find or screaming at you for not having their paper. You would think this would have been too stressful for someone with my high anxiety levels but I still did ok. I put this completely down to the young lady I worked with. She would come in singing at 5.45am and rarely lost that smile and happy outlook which made it pretty hard to get grumpy. She had been doing the job a few years and made me feel very safe and looked after. She later became a good friend of mine :) I left this job when I had my first baby, I lost the first one in case you're confused.
When my daughter was 6 months I got a job at a small video rental store in the evenings. It was a warm friendly place with regular customers and I really enjoyed organising the videos by number and of course getting to watch all the new releases. I remember them releasing the first x files box set :)
I worked here for a few years and the only problem I remember was getting along with some of the other staff. My manager was sacked for sexual harassment and I had been oblivious to the fact that most of what he said was highly inappropriate and unprofessional.
The only work I did after that was volunteering at the girls school for lunch duties and listening to reading etc
When I was working at Waitrose I had no idea how well I was being treated and I did get stressed with the noise levels in the store sometimes especially if I was on the kiosk near the cafe with the coffee machine going. I did forget to make eye contact with the customers sometimes. I tend to go bright red when people talk to me and this was commented on a few times. One of the toughest things was fighting the tiredness. I find concentrating on getting things right for the job and all the social interactions incredibly tiring. After an hour with my therapist I am fit for nothing but sleep because it's so incredibly draining engaging so intensely for an hour and challenging your thoughts and beliefs it totally knocks me for 6. Therefore working a 6 hour shift is really draining for me, I'm not lazy I'm just so overwhelmed by all the sensory input and all the thinking involved in trying to appear as though I'm like everyone else.
You may wonder then why I decide to leave Waitrose for a job elsewhere doing a different role? In simple terms I wanted to be closer to home. Getting to Waitrose involved an hour and a half's travelling if I had to get myself there. This included a train journey, a long walk and a bus ride, all of which cause me a lot of anxiety. You wouldn't know if you saw me sat on the train station that I was having constant visions of throwing myself under a train and when the fast trains go flying through I'm screaming internally with terror. You wouldn't see how uncomfortable I am sat on the bus with people talking and listening to music and smelling weird. I internalise all this anxiety and at some point it comes out in the form of a melt down or more often just me being snappy and mean to my family. I just look miserable from the outside (so I've often been told) like I'm a moody cow, which I guess I am :) but really I'm just frightened, terrified by people and their unpredictable natures, deafened by noises, blinded by lights, tortured by the visions in my head and confused and stressed by the constant chatter in my head trying to make sense of it all.
Maybe I should not have been surprised therefore that my new job did not go well. My first impression on visiting was 'wow, that's a small space behind the counter and there's about 4 girls trying to squeeze past each other while bustling about busy with orders' you see my instincts were spot on that this may be an issue for me.
The first day was truly awful, 8 hours on my feet rushing orders back and forth, carrying heavy trays, tying to learn how to use the coffee machine, (which was less annoying when making the noise myself?!) being told different ways to do things by different people, 30 mins for lunch when you're not sure how to get to the canteen meaning wolfing down half your dinner before running back. I genuinely thought I was going to break or die. Every part of my body was in agony by the time I finished and my head felt like it was going to explode.
I told myself my body would get used to the work but my head was a different matter.
The next shift was no better, there was no let up in the pace, no chance for a sip of water or a loo break. I had a 6 hour shift that day and was told I was not entitled to a break. I don't do well when I haven't eaten and I knew this would only add to my problems.
The other girls seemed impatient with me, I was always in the way, I had to be reminded over and over to check for tables that needed clearing. I couldn't get the coffee right. It was hot, I had such a bad pain in one foot I could barely walk.
The next shift was the day after so I'd had no time to recover, I tried to escape into the kitchen to wash dishes where at least I could focus on one task and was not being constantly touched and shunted to one side while being given several different jobs in the space of 5 minutes.
I struggled to remember all the rules while serving, I apologised countless times for getting them wrong. I tried to remain friendly and upbeat but it was all getting too much. I tried to ask one of the others about an order and was ignored twice then told to do something else but I couldn't, I'd been asked about an order by a customer and I needed to answer her before I could do something else.
I snapped both internally and literally, I couldn't wait to get out and I knew I couldn't go back.
I felt like a mental patient there, like I had no grasp on anything in my life. Even when I got home I couldn't function, it was as if I'd been physically assaulted and mentally tortured for days. I felt ill, I felt really disabled and I felt as though I'd never be able to do a job again.
It took a while and a reminder from my husband that I could manage at work, I'd managed at Waitrose. I'd still struggled with some things and some days I'd been very stressed and taken extra medication and then had trouble staying awake, but on the whole I'd done ok. Both my husband and therapist have said I coped better in general when I was working there, maybe having the time out from the stress of family life or having something for me to focus on that I felt I was doing well with? I don't know what it was and I don't know if I was coping better. When you're in a constant state of high anxiety it's hard to notice the small moments when you smiled, relaxed for a millisecond, to feel proud that you helped someone or that you managed a situation well.
Anxiety is huge for me, every minute of the day I am on high alert, my jaw is clenched, my head is running overtime processing and making up nonsense that just adds further to my anxiety.
I have sometimes felt like I should have achieved more given that I have a degree and I know many people think working in a shop is a sad and somewhat pathetic job but now I see what an achievement this was for me. I may be over qualified in academic terms but I was born with restrictions and I have struggled for nearly 40 years to understand why I have these. You can't see them from the outside but they're very real for me.
There is a lot of talk right now about getting disabled people into work and especially those with mental problems and it frightens me. I was lucky to find jobs where I could manage my anxiety, where I had people willing and able to make adjustments for me even before I knew I needed them.
Not everyone will be this lucky and a bad experience like I had could totally break someone who is forced to remain at that job either by the system or because they need to feed themselves.
If I had had to stay in that job it would have broken me, I would have had a nervous breakdown. I am lucky that I am in a position where I could walk away and with a hopeful heart re-apply for my job at Waitrose :)
Friday, 21 August 2015
Freya goes state side!
Freya had her first big holiday this year, all the way to Florida
I was dreading the flight and it was horrific but I have to say Freya was not a huge problem, Lucas took the medal for the most screaming ever done on a flight and causing most parental reprimands for unbuckling his seat belt!
I was dreading the flight and it was horrific but I have to say Freya was not a huge problem, Lucas took the medal for the most screaming ever done on a flight and causing most parental reprimands for unbuckling his seat belt!
So here she is on our first day, at Magic Kingdom. She had a makeover hence the hair but has already got the beautiful dress soaking by this point in the water play areas
The makeover was amazing and totally worth the high price tag in my opinion. She was so well behaved and just soaked up all that attention!
Freya really loved the characters, just look at that smile :)
For me this is why we went, not for the rides
They were busy days...
They both really enjoyed the water park, Freya loved the freedom the life jacket gave her
Freya enjoyed spending time with her big sister who doesn't live with us :)
We visited Hogsmeade...
Met Curious George.....
Played in the pool with her other big sister...
We saw a LOT of cool motorbikes
We visited the East coast....
The West coast..
poor Freya!
We had an amazing day at discovery cove :)
When I told her the chinese restaurant didn't serve chips!
Toddlers and teenagers loved dinosaur world
We had an amazing and tiring time :)
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