Another day, another challenge

Today has not been a whole lot better than yesterday, Lucas has been at home all day and has been challenging to say the least.
We managed to escape Ikea without buying any more pandas despite his best efforts but then ended up spending about an hour in Asda looking at toys he needed while the meatballs defrosted in the car.
On the way home he managed to chew through the material of his new coat so the zip fastening came out the top and can't be mended :/ it was the most horrible sucking sound that was setting my teeth on edge so I sat with my hands over my ears all the way home being thankful I wasn't driving.
I've been trying to make an appointment at the doctors for Freya for 3 days now, it's just something itchy on her foot but it's driving her nuts and the chemist won't give me anything without her seeing the doctor first *sigh
We stopped off to get the damn hoppers on the way home from Ikea, Lucas got very over excited by all the Christmas decorations and proceeded to roll about on the floor in the café and pull the chair cushions off before starting to squeal loudly, so we left before I'd finished my hot chocolate.
Chloe came home and is acting like nothing happened, just to piss me off a bit more she's dyed her hair some cross between white and purple, making her a bit more employable *smacking my head against the wall
Teatime was the usual joy of Lucas having a paddy and not eating anything then I found him under the table with the block of cheddar.
I wonder if they have any idea how draining they all are. Roll on bedtime.

Feeling overwhelmed

I feel really sad this morning, the kind of hopeless confusion that comes over me more often than I clean my bathroom and leads my husband to say " oh you're feeling sorry for yourself today"

I don't think I feel sorry for myself, I just have so many thoughts I can't do anything with and that's nothing new but where as I usually get agitated and snappy, today I feel like I've taken one too many of my meds and now I'm just trying to get through the day from a sedated view point.

My main grievance today is my 18 year old, a series of events yesterday caused me to snap and tell her to move out, I don't feel that this in itself was unreasonable but it's the knock on effect of losing it that's harder to justify.

Freya was getting ready for rainbows at the same time I was trying to have it out with the older one and was moaning on about whether she would get Olivia doll to take home today, she's been going about 8 months now I think and her name has yet to be picked to take it home. So my response to this interruption to my argument with her sister? "Freya, I think you should just accept you're never going to get Olivia doll to bring home, wouldn't that be better than just setting yourself up for a disappointment every week?" :(
She just looked at me with sad little eyes and nodded.
Now of course by the end of rainbows she told me that while she hadn't got Olivia again today, her name was definitely in the tin and she would get it at some point! So she's probably not scarred for life but I was left thinking what an awful parent I am and what sort of an example was I giving her for later life in that statement.

The whole day had been fairly stressful, I'd said I'd go into work 7-11am to help out on another section which had meant leaving the children in bed asleep while Mike drove me in. (with Chloe in the house obviously) he was stressing all the way that Lucas would wake up and cry for him and Chloe wouldn't go in and sort him out etc etc so I was feeling guilty for agreeing to go into work.
Work by comparison was the easy 4 hours of the day it turned out.

I had to walk home which I've never done before and I was stressed I wouldn't be back in time for Lucas coming out of nursery at 12, actually I did it in 40mins and was quite pleased with myself thinking that will help knock a bit of fat off my gut! (who am I kidding right?)
On getting to the school Mike turned up just as he was coming out and Lucas went straight to daddy and totally ignored me.
Lucas has been having a bad week since his friend was off school last week and seems to have reverted to his former fear of going to school but that's another story.

When we got home Chloe was coming out with her "friend" in normal clothes, she was due at work in the next hour. "Oh I've phoned in sick" she tells me, "I've got a headache and I feel sick, and I've got to go and buy some hoppers for my frogs because you wouldn't take me yesterday". We didn't take her because we were going down to Kent later in the day and didn't fancy a trip to Bedford and back as well, and because she started being really rude.
So, I'm already mad at this point as this is about the 7th time she hasn't gone into work and she had promised me she wasn't going to miss anymore but this is what she does when there's a more interesting offer on the table. I don't know why they haven't sacked her already and this just adds to her cockiness that they won't. I've have talked till I'm blue in the face about responsibilities and not letting people down, I have reminded her that she wants to go back to camp America next year and she needs to save for it herself this time and she has already booked herself in for a tattoo next month that she won't be able to have if she loses her job but none of this seems to be getting her to go into work!
So off she goes with her "friend"
She then texts me later to ask if I'm going to take her to get these hoppers when she gets back?!
Mike is already on his way back from Bedford and hasn't got them because of course she said she was going out to get them.
When I say no and explain all this she says "well I decided to go to Jump with my friend instead", this is a trampolining park, what we all do when we've got a headache and feel sick! Then she says she's been into work and booked today and tomorrow off?!
My head is a total mess by this point, you wouldn't phone in sick and then waltz into work and book some holiday would you? I don't know what is going on in her head and what's true and what she's lying about!
So by the time she got home I'd lost it and told her to find somewhere else to live, she looks at me all confused like why don't you love me? She doesn't seem to mind that it will be me who picks up all the pieces when she gets fired and have to pay for her smoking habit and her trips out to see friends. It's me that will have to deal with her when she hasn't taken her meds because she can't afford them and is in the mind set that she doesn't need them. It's me that now has to pay to keep this gecko and frogs that I didn't want in the house in the first place.
I know, my husband would say I'm making it all about me at this point, but I never understand that, I have to look after my own sanity first or I can't look after anyone else. Am I not allowed a point where enough is enough?

I then get a phone call from the friends mother who now fears she will have to house my daughter and proceeds to tell me how displeased she is that they are seeing each other again due to Chloe's manipulative personality, said in the nicest way possible of course. She tells me what an awful time her daughter has had over the last few years and how she won't tolerate Chloe ruining her future.
I want to tell her what happened with my older daughter when I tried to pull her in line and advise her against trying to control her daughters actions and relationships but who am I to give parenting advice!
She tells me she thinks I'm a good parent as Chloe is always polite and helpful when they see her, I know I'm seriously lacking in the emotional support I should be giving and maybe this is why all my kids except one are slightly off the rails. I try to remind myself that there's nothing I can do to change the past and I must soldier on with bringing the little 2 up better. The horrible statement I made to Freya flashes back into my mind and I can feel myself caving, I make my best effort to not cry on the phone and manage to hold it together until the kids are in bed.
Mike knows me too well and takes himself off to Tesco to get me some vodka to drown my sorrows in. I try to remind myself there was a time when I was drinking every night just to try to blur out the days, I must be doing better these days?
Fortunately we got watching a good programme and I didn't drink too much but I still feel lost this morning and like things will never get easier.

Mike wants to take me to watch the accountant today as he says it's like me before my meds (not the shooting people of course, I think he means the obsessive behaviour?!) but even that reminds me that I'm autistic without any talent, people are always saying that autistic people have difficulties but they always have a gift but that just isn't true :(

Maybe I am just feeling sorry for myself after all :(

Introducing Lucas

I've thought of so many blogs to write about Lucas, but as my only son and my youngest and last child, I feel rather more protective of him than is probably healthy.
That said I think he provides a great insight into high functioning autism, I'm still calling it Aspergers!

I never wanted to have Lucas seen by the paediatrician, we'd had such an awful time going through it with Freya, the last thing I wanted was to start the process over again.
At the time we were still having someone in from the early years team at home to check on Freya's progress and observe her in nursery etc and it was during conversations with her about Lucas's emerging oddities that she advised me to let het refer him. You always want to be doing the best for your kids and as she pointed out, if he did need help the earlier he got it the better, and so began another round of appointments and hours of explaining and justifying.

I think he was around 18months old at the time but had already begun creating little 'rituals' for himself. The first one I noticed was that he wouldn't go upstairs with his shoes on, he'd sit on the bottom step, take them off and then go through the stair gate one step, turn and close the gate. This might just have been copying if anyone else in the house did it but they didn't, my husband normally kicks his shoes off by the door and I wear mine all day. He was very insistent on the gate being closed as well usually with me on the other side of it, if I tried to go through or leave it open he would begin screaming and throwing himself at me.

He began collecting things on trips out of the house, it started with pebbles for a while then only feathers then one day the postman had dropped elastic bands all up the road and we had to stop and collect all of those. He began to insist on stepping on every drain on the trip to Tesco and would try to bolt into the road to get to the drains there.

The sensory things were really obvious early on as we'd seen a lot of sensory seeking with Freya but Lucas's were different which further convinced me he wasn't just copying what he saw around him.
My husband was in total denial and blamed Freya for all his bad behaviour.
He's nearly 4 now and is still mouthing pretty much everything he picks up, he loves to smear stuff, ketchup, gravy, creams, pooh, anything that you can make a mess with really. This came to a head when my husband left him to run a bath and he'd done a pooh in his pants and by the time my husband came back he'd rubbed it into his face and began throwing it at his dad. You can't explain these things to people who haven't experienced it and it's horrendous and you really need to tell someone because you feel desperate and hopeless.

By age 2 we were already limited to 1 drink, I don't remember what it was at the time but it still goes like this, for months he would only drink apple juice, then it was hot chocolate, now it's hot chocolate and blackcurrant so that's something I suppose although it has to be in his dog cup and at the right temperature with just one scoop of chocolate powder or you get it lobbed back at you. Yesterday was taking things too far as he insisted Mike put the milk into the cup and into the microwave and then I put the scoop of chocolate in and stirred it before giving it back to daddy to bring to him! I don't mind making these seemingly stupid allowances for them, it's just part of who he is but sometimes you do think now hang on you're not getting away with that.
I remember a few months back we lost both dog beakers because he throws everything when he's finished with it and we had a few awful days when he wouldn't drink anything because it wasn't the right cup until I found an old pirate beaker of Freya's which he decided was acceptable and this became the new only cup he could drink from. A week or so later we found the original dog beakers and thought he'd be delighted but he refused to use them?! It wasn't until he threw the pirate beaker one too many times and it broke that he would have the dog beakers back.
I know what you're thinking, I bet he doesn't have a dog beaker at nursery and just gets on with drinking from a cup? Yes he does, I assume, I've never been told that he's not drinking but there's something different and almost magical about when they're not with you I've concluded, that means they can do things for other people that they won't do for you!
It's mainly due to the constant throwing that I'm just not prepared to give him an open cup and on the odd occasion I've tried it's been a disaster to the point he keeps saying to me at the moment, "I can't drink from a cup without a lid mummy because I always spill it don't I?"

I worry about his opinion of himself, he's a lot like me in some ways, just so full of anxiety and frustration, the total opposite of Freya. In the holidays he kept trying to do new things and saying "I'm not good at it mummy, I can't do that" I kept reassuring him that he was good at lots of things and just needed to practice new things but he's been blessed with my lack of patience so he just gives up or totally annihilates whatever it is that's causing him the frustration!

His massive anxiety is what causes him the most problems, it affects him every day at home and more so when out of the house. The Dr always says what is he anxious about? and I'm like, everything?! "What's that noise?" "There's too many people at the school gate" "That lorry is too big" "Where are we going?" "What are we going to do next?" "Who will be there?"
He has to check everything to make sure he knows exactly what's going on and what he needs to do.

Obviously he didn't get that kind of input when he first went to nursery and it was the hardest year of our lives, he went 2 days for 4 hours and it was murder. He would start screaming or sobbing at home as soon as he realised he had to go, you'd end up carrying him the whole way as he refused to walk to his doom. He did bond with one lady there in the end but we were still peeling him off us the whole time he was there and if he couldn't see her as soon as he went in he would start screaming again.
It was at this point that we noticed he wouldn't speak to other people, eventually he would speak to his special lady at nursery but no one else.
His key worker who did play therapy at home and observed him at nursery was convinced he had selective mutism and didn't think he had any signs of autism??!! This hugely concerns me as these are the people who are meant to be the experts, the paediatrician asks for their opinion before diagnosing them and yet they seem to be totally clueless, they're still looking for the old fashioned signs of no speech, no eye contact etc
She asked the nursery to implement visual aids and give him less words for instructions but I always maintained there was nothing wrong with his understanding, the visual aids help lower the anxiety but he's not stupid he doesn't need talking to like a baby.
He moved to the nursery at school where Freya went last September and he has been so much better there. I don't know if it's because he was used to going in there to drop Freya off, or because he saw Freya now and then while he was there but his key worker said it was like observing a different child. He still refused to speak and after finding a new lady to cling to he was very anxious when she left his side but slowly he began to play next to the other children.
He still panics as we round the corner to school, we have to wait until the coat area is nearly empty of parents and children before going in and he still clings onto my hand and must give me a kiss and hug before he will let go but he's finally made a friend who apparently he talks to, (he doesn't speak to him at the gate, he just hides his face and looks at the floor?!) there's no more tears about going although it's the first thing he asks on waking and he's much happier when it's a stay at home day.
He said to me the other day "sometimes I don't talk to people do I" so I asked him why don't you talk to people? "I don't like some people he replied" which I thought was fair enough but doesn't explain why he doesn't speak to his friend at the gate!

Another big problem we had from early on was his not wanting to be touched, especially when he's hurt himself. This is upsetting enough at home when you just want to help him but is really hard when we're out and about. I remember he fell over at the dinosaur park and I went to pick him up, (I should have known better really) and he went from crying to full on screaming and then kicking me with all his might. You can imagine the looks from the other parents, I expect they thought I'd hurt him or that he was just a horrible spoilt child!
Recently on holiday he fell over and I just walked round him and carried on as my husband was behind me and I knew Lucas would have a fit if I tired to help him but daddy is allowed usually. You should have seen the look on one bloke's face, I'm sure he thought I was a cold hearted cow who doesn't care about her son but he didn't know what would have happened if I'd have tried to pick him up and he doesn't know how much I love him, it's so hard and only we know what's really going on with our son and what's the best approach and sometimes we both get it wrong and he won't have either of us and we end up with a full blown meltdown because we didn't understand what he said or we did something the wrong way and I'm sure in Lucas's head it was perfectly clear and he's told us a hundred times how he likes things.
We took him to Edinburgh during the summer because he's obsessed with pandas, Edinburgh is the only place in the uk with pandas at the zoo. That was the whole reason I organised the trip and it was the worst day of the holiday. The zoo was a nightmare with my husband in a wheelchair, so steep and he's not a small bloke. I was fed up, the kids were too hot because it was the one day it decided to be uncharacteristically boiling and the pandas wouldn't come out so we had to keep going back to check and then loads of people stood in the way so we couldn't see. The kids were excited so made noise which was forbidden and we were frequently told to shut them up or take them out! It was a 7 hour drive to Edinburgh, we weren't leaving without seeing the damn pandas! We then managed to loose Lucas who wandered off to get more ice cream apparently! When we found him he refused to speak to me or even look at me, making it look like I wasn't even his mum!

I'm sure I've forgotten loads of stuff but I wanted to introduce Lucas to all those who've read about and been following Freya's journey.

Lucas is the stropiest child I know, he's gross and he regularly hits and kicks me and refuses to let me do things for him but he's also very funny and cheeky and can be very loving. He drives me absolutely insane but I wouldn't be without him.

 

 

Aragon Housing Association complaint!

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.

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!

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 :/

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 :/