Freya gets crafty....

In my effort to occupy Freya I bottled out of the paints and opted to start off with a white board.
My friend has one at her house and all the kids love it.
I got one that goes on the wall as we don't have a lot of space. I have to say she hasn't used it as much as I hoped she would. It's also driving me slightly mad that the pens seem to miss the huge board and go on the wall and then she just throws them on the floor without lids on. Also the board wipers don't actually clean the board. I end up scrubbing it every night with some cif :/
There has also been more being mean to Lucas about it and not letting him join in.

Since I love cake I tried to do some baking with her, this again is a real challenge for me as I can't stand the mess she makes and she insists on doing most of the mixing herself despite the fact she isn't strong enough to mix. She doesn't like taking turns with me anymore than anyone else. Coupled with the fact you've only got to turn your back for a second and she's doing something awful I'm amazed it turned out so well!

Making her own sandwiches is another thing I keep catching her doing. It's the same every time, 2 slices of bread, butter then jam, one on top of the other then cut into triangles, normally I get to to cut it but this time she tried to make her own triangles.

She asked to do some more baking so we made some chocolate buns, as usual as soon as I turned my back she'd stuck the bowl on her head!

Freya keeps busy

After giving Freya's sensory questionnaire to my autism nurse he told me that while I am hypersensitive (over sensitive) to pretty much everything, Freya is generally hyposensitive (under sensitive) to most things. This explains why she never sits still, why she pokes into everything and talks non stop with relentless questions :/ She is constantly seeking stimulation and she does that by licking things, jumping across the furniture, spinning herself round and round and making a mess with whatever she can get her hands on to name but a few habits.

If I'd been sceptical about this it was proved to me when I took her to town the other day and just by chance she had just opened a lolly as we left. She ate it all the way to Morrison's while holding my hand and walking nicer than I've ever seen. While we usually have a fit in the shop about having sweets I said to her "we're not getting sweets Freya as we have so many at home" and to my disbelief she said "OK mummy"!! She then had an ice cream on the way home and was just as lovely as on the way in.
It didn't occur to me until later that it was probably the licking that had kept her so calm.
I intend to try it again just to be sure of course

This morning I met Freya's new key worker at nursery and was explaining about her sensory needs and how she was better at nursery because she has constant stimulation. I had told this to another few people before it dawned on me that if I tried to provide more stimulation for her at home she might behave better!
This may seem to have been very obvious to others but it took me a while!

It is hard for me to contemplate arranging chaos as I need things to be organised, controlled and non messy for my own sanity :/

Therefore, thanks to the little patience my meds have given me in the last few weeks, (it's still very poor) I started slowly trying to get involved with a few games with her and getting her involved in some things that interest me.

She was very interested in the hedgehog house and was delighted to help put some food out in the hope of enticing our regular visitor to use our little home for his hibernation this year.

We bought a jumbo box of jigsaws from the charity shop for a whopping £1.99 :) She loves her puzzles and after you've helped her once she can usually do them from memory very quickly, the only issue being she thinks she has to do all of them every time :/

We played the shopping list game together which she loves, I find the organised set up of it very pleasing and she loves looking for food to put in her trolley, just like at the shops but cheaper!
She was distressed that a few cards were missing meaning we couldn't "buy" everything on our lists so I've ordered her a new one.

I am hoping to take inspiration from my niece once again and be brave and buy some paints and things for more messy play, I just hope my nerves will take it!

Christmas with Freya

Christmas is always hectic when you've got little people and expensive when you have teenagers so I was expecting to feel overwhelmed this year, I wasn't sure how Freya would react to the festive additions to the house, whether she would rip open everyone else's presents and had accepted she probably wouldn't join us at the table for Christmas dinner.

I was therefore pleasantly surprised at how well it all went.

She was ridiculously excited when the decorations came out but that was my bad organisation, it really would have been better to put them up when she was in bed.

I eventually managed to get the tree done and she and Lucas regularly re-did it for me until the bottom of the tree was rather bare!

She really loved her stocking which turned out to have to be her Ben and Holly bag as I couldn't find all the stockings! The present opening was manic and she kept asking for more and more not taking much notice of what she'd opened. However she didn't try and open anyone else's so that was good.

Amazingly she did sit at the table for most of the dinner and even put a hat on briefly before running off to play and even let Lucas share her new keyboard!

update on me...

I have to say the amount of input I've had from the clinic in Bedford since my diagnosis has been a pleasant surprise. I guess I was expecting to just get sent off with my new "label" and have to get on with it.
I credit a lot of that to my autism nurse who seems to go out of his way to listen to my moans, answer all my odd questions and make me feel I'm not really a bad person, I'm just a person with autism.
I wish I could keep him at home as a constant source of support but I'm sure he needs the break by the time he leaves lol.
I have been on tablets for my stress (my nurse calls it anxiety) for about 5 weeks now and the side effects are not as bad as they were. Initially I was incredibly tired and felt like I had a permanent hangover. It made it hard to carry on as normal as my head was so fuzzy I just couldn't concentrate.
I don't feel much less anxious yet but I have noticed I have been a little calmer with Freya's outbursts and I have had moments of messing about being silly like I used to at home.
I have had weekly home visits from my nurse to put in place a treatment plan and help understand some of the queries I've had. We are both big talkers and usually end up going off at a tangent about something autism related. It has been very helpful to have someone to talk to about things that have happened at home since the diagnosis as I always feel very isolated.
The biggest challenge has been my husbands reaction to the diagnosis. He encouraged me to go through the process and was there at my appointment to support me and help explain my difficulties.
I thought that things would be easier for him now he knows why I do the things I do that drive him mad and leave him dumbfounded but in fact he has been much more critical of me than ever before and has makes daily comments about leaving me.
My nurse has tried to explain to me that he is stressed too but I can't get my head around it. To me I'm the same person I've always been but it seems like now he realises he can't change me he doesn't want me anymore.
I find it hard to justify this as he is disabled and comes with his own set of challenges for me.
I know that he finds my lack of empathy the hardest thing to cope with, he tells me every day that all I care about is myself and I just keep stating that I don't mean to be that way but I can only see how things affect me, I don't know how things affect other people and even when I ask, people are rarely honest in their replies which is greatly unhelpful to an autistic person.
My nurse has recommended me for cbt with a psychotherapist as he said I put u a lot of barriers which prevent me from bringing down my stress levels. I've always said I was my own worst enemy!
I was very sceptical as I've had councillers in the past and not found it helpful but then they didn't know I had aspergers so I'm hoping this time will be different. Our first meeting went ok and she explained we would spend the first few weeks picking apart where I am in my life at the moment and how I got there. I'm really looking forward to that as it's important to me to work out what things are from the aspergers, what is from my past experiences and upbringing and what is just me if anything!
From there we can look at what I would like to work on if anything.
I have felt like since my diagnosis everyone has just been trying to change me, to make me more "normal" with the pills and the analysing everything but I was pleased to hear her say she wasn't there to try and change me just to help me make sense of things.
I was unusually rational and decided that what I want to achieve from the sessions is to work out the bits above about who I am and to feel like it's ok to be myself, warts and all.
I don't want to change, I would like to be less stressed and for others to be more understanding of my difficulties and I feel the 2 things go hand in hand. Until I can be accepted for me I don't think my stress levels will come down as I feel constantly frustrated and misunderstood.
My nurse gave me a sensory checklist for Freya which I completed for myself as well and was amazed how many of my struggles are down to sensory issues. I've always known I don't like noise but I hadn't realised my tolerance levels were so low until my husband pointed it out, he says I'm like a killer bee :/
Through talking to my nurse and rabbiting on about the things I find relaxing he has pointed out to me that they are all low input things, ie: watching wind turbines, watching the washing machine, sitting out in a kayak on the sea with no one else around. I had done a picture years ago during my degree showing me on the sea on my kayak and I had put a thought bubble above me saying "out here I'm free" it's so strange now, all the signs were there but I didn't know. I really can only feel relaxed in complete quiet with no stimulation or natural noises like water, quiet birds etc.
We are going to try and find ways to achieve this without having to drive to the coast with a kayak or install a wind turbine in the garden. As a first step I have bought myself a pair of ear defenders which look quite ridiculous but made lucas's screaming before bed so much more bearable :)
I am great at telling others that you have to look after yourself to be able to look after kids but I'm not much good at following my own advice.
I tried to express my feelings to my nurse by explaining I was still wearing my maternity pants as I felt selfish buying new underwear, I'm larger than I was before Lucas so can't wear my old ones :( he looked highly embarrassed but just laughed at me and suggested I put them on my christmas list for Mike at which point I went into a rant about how men only buy pants I may have worn at 21 but these days I'd like something comfortable not a few bits of lace strung together pretending to be big enough to cover your bits! He was roaring with laughter by this point but I was just stating a fact, I didn't think till I'd left that it probably wasn't the most appropriate converstaion to have with a male nurse but then he's used to autistic people and has probably heard worse! :)
January will bring the start of my involvement with research at Cambridge university and I am really looking forward to that but for now it's my birthday today and I am going to the Harry potter studios later and am super excited about it because I'm such a huge fan of the books and films and I'm just a giant kid still :)
Happy christmas to all my readers lets hope we all survive the maddness :)

Freya update.....

I haven't been able to keep up the blogging much recently after starting my meds as I have felt not at all like myself, so thought I'd do a quick update.

Here is a photo of Freya going off to her nursery christmas party this evening, she looks very grown up and a little apprehensive and very beautiful but of course I'm biased!

She was very unsure when we got to nursery as she was expecting me to leave as I usually do and there was an awful lot of people with the parents and kids there. She slowly edged her way off my knee but couldn't settle to watch the magician with the other kids finding safety with her key worker. She was quite happy to go off for food though not surprisingly! She waited for a balloon animal at the end and was give a red one as requested before paying a nervous visit to santa.

She had visited santa a few days ago at the shopping centre which I was very nervous about as we had been advised it usually wasn't a good idea for autistic kids. However it had been Freya's choice, she wanted to see him and I had explained he was a big man in his red suit and she was keen to go in. She does look slightly terrified in the photo but she was quite happy to tell him she wanted a blue scooter for christmas, he thought she said computer so I now have to buy a blue scooter and a computer! Luckily I had picked up a v-tech laptop in the charity shop last month and put it away :)

Since my last blog we have had several visits to the carrot shop as Freya calls it (ikea) she loves trying out the beds, climbing in the kitchen cupboards, playing in the kids rooms etc

We have seen a few movies at the autism friendly screenings with varying success, we saw Frozen yesterday and she was better behaved than last time as there weren't any other kids running around this time. She loved Turbo as it made her think of her snail helper :)

There's been some cycling....

Some exercising.......

Some dressing up.........

and many many rides.....

I am still awaiting the piece of paper with her ASD diagnosis in black & white but have found talking to my own autism nurse very helpful. He provided me with a sensory list to check for Freya and I couldn't believe how many she had. I also used it for myself and was even more surprised how many I had! I have enquired about a private sensory assessment for her and hope this will help me understand how to help her. She seems to be under sensitive to most things and that explains why she is always on the move, she's constantly seeking out the sensory stimulation she needs.

New things we have noticed in the last few months have been a definate decline in her motor skills, she was always a good climber even though her movements were stiff but she has become very clumsy now and usually falls if climbing. I can guarantee at least 2 injury slips from nursery from her 3 days in, one day I had 3 in one day!
She has started making a weird noise more and more often, it's like a one tone groaning and she does it either on and off or for about 5 mins non stop. I can't see a definate pattern with it but she does do it when Lucas is getting attention, when she's been told off and at times of higher anxiety ie: when we're out in town.
In the last few days she has started rejecting anything to eat if it's broken, this can be hard if you've bought chocolate and it's got squashed in the bag so all the bars are broken and especially first thing in the morning when she's sat removing all the broken cheerios from her bowl before you can put the milk in :(
Although the tantrums seem less frequent she has become much more aggressive, Mike and I are now regularly getting hit along with lucas who gets kicked, pushed and hit on a half hourly basis.
On the up side she has started to interact with some of the kids at nursery, still playing her usual games with her rules, but it's progress.
The other day I saw her pretend she had a phone with something that was totally unlike a phone.
She is listening a little bit more when I say no as long as I explain she can have it later etc or offer an acceptable alternative.
Her play therapy has gone so well she doesn't need such regular visits, not exactly a reward for her!
During the last session her nursery nurse showed her a lego farm picture briefly and she had recreated it from memory in about 2 mins with fairly impressive accuracy.
She is very excited about christmas and seems to be understanding the countdown, she loves looking for the numbers on her advent in the morning and she can count backwards so seems to understand it's less sleeps left each day. She is very clear what santa is bringing and god help us all if he doesn't get it right!
I will be updating the blog with my own treatment progress in the next few days for those who are interested :)

Babies sleep 12 hours a night & other fairy tales....

Anyone reading my blog regularly will have noticed by now I have a real bee in my bonet about the constant expectations being thrust at mothers making the experience of bringing up kids feel less an enjoyable adventure and more of an unacheivable assignment.

It's worth noting it's not all media based, other mothers can be the worst culprits.
The headline statement was spouted at me by my own mother last week when she was here as a "helpful" reply to my complaining about how tired I was.
My mum watches a lot of tv and likes to fill me in when she visits on what the latest advice has been this week on all kind of subjects.
She generally starts with "well you don't watch tv but..." or "if you watched the tv you'd know...."

Let me just say I do watch tv but I just don't share her passion for soaps, the news, any program where the police are showing us what a delightful country we live in, anything with people with bones sticking out bleeding or any kind of talk programme. I find them all depressing and stressful.

So mum had seen a thing that stated that babies should be sleeping for 12 hours a night?! My response was "which babies are these??", "all babies she replied, it said so on the tv".
Clearly no one has told Lucas this, maybe he missed the sleeping orientation because he was busy checking out a door or set of wheels or smiling at some girl baby waiting to be born.
Lucas sports many no nos when it comes to bedtime and we could no doubt do a whole talk show just on his faults.
He won't be put down unless he's asleep, he spent months crying just to get in my bed and then was happy to go to sleep, he was still waking for a feed at 6 months and he usually finally collapses about 9pm and gets up at 5am with at least 2 visits from me during the night to replace his dummy or come and sleep with me.

Yes I'd love a whole nights sleep, I can't remember if I've ever had one now. Before Lucas was born Freya was still getting up every night and either getting in bed with me or wandering about or crying.

I can't complain about bedtime with Freya too much as she has always just taken herself off to bed when she's tired and on the whole she doesn't come back down. She does however still wake up in the night quite often and because of her inability to identify danger I still have to get up and return her to bed and check she hasn't tried to smother Lucas. (yes she's tried before fortunately we were in the room at the time.)

This reminds me of another good fairytale told by another mum was when Lucas was 6 weeks old, after asking how old he was and if he was sleeping through she announced, "well you've only got another 2 weeks till he sleeps through then"!! I'm not often left speechless and I don't think fast enough to have worked out at the time why she would have said such a thing.
When I thought about it afterwards I realised that both her children must have started sleeping through at 8 weeks so she, quite logically, thought that's what all babies did.

I seem to have taken turns with one placid baby, one screaming non sleeping bundle etc so by the time I'd had my second I was only too aware how different 2 babies can be.
I'm not even going to buy that it's the parenting style or experience, patience whatever as it is very clear looking back that my children began to express their personalities from the minute they emerged into the world. My 16 year old screamed non stop and would only sleep if I was carrying her, at 5 she was still awake at 10.30pm and now she stays up till 4 or 5am!

I was reading the other day that it has been noticed that autistic children scream more as babies. As I say I take all this information with a pinch of salt as I just don't believe you can generalise anything like that. Yes Freya screamed a lot when she was born, the woman in the bed next to me asked to be moved! And the other 2 who screamed a lot are the 2 with challenging personality issues, I have no idea if they are autistic too but it seems to me it just highlights the kids with more to say for themselves, they seem to be letting you know, "I have additional needs, don't neglect me"

I find the "they shouldn't be doing that" comments equally as annoying as the "they should be doing this" comments, like the recent speech therapists comment that there's nothing unusual about a 3 year old not being able to string sentences together properly and lots of kids add "jargon" aka nonsense into their talking.
Maybe it's just because I have a need for people to be specific but if what they mean is it's not unheard of then that's what they should say, not speak to me in a condescending manner assuming this is my first child and I have no idea what I'm talking about!

Obviously I was a first time mum once and it's the memory of things that were said to me and how I was treated then which make me want to stand up and yell "all mums are different and all kids are different, if we ask for advice please help, if not please let us get on with making our own mistakes and parenting in the way that works best for us!"

Aspie dating?!

I discovered the other night that there are dating sites just for people with aspergers. After some general reading about the challenges faced by sufferers it seems proven that you are more likely to have a lasting relationship with someone else with aspergers than a non asd person.

I can see some logic in this, you are more likely to think the same way, maybe understand each others need for obsessive hobbies, but on the whole I don't see how it can work.

I've had many relationships and am aware that I need a laid back man to put up with me, I'm also aware that all of the relationships failed because I had no empathy with my partner. It was for different reasons, not being able to understand why he needed to go and and see his friends, why I wasn't as important as his kids etc

It was somewhat surprising therefore to read the profiles on one of these sites and see that nearly every one said they wanted a partner who could show them empathy?! Maybe they don't understand their own condition or they don't really want someone like them or they mean they just want to be understood.

I don't understand my autistic child any better than I do my non autistic children because they are all different to me, one of my daughters doesn't like noise either but when she moans about noise it annoys me as when I'm making the noise it's necessary and I expect it so it doesn't annoy me then the same as her video game noise doesn't annoy her but drives me nuts.

Surely it's better to have a non autistic partner who can see things from others point of view than one who can only see their own?

There was another article saying people with aspergers simply aren't up to the job of parenting which again made me think you need the balance for the kids too. My husband does the listening and caring side that I find hard and I do the practical and discipline side which he finds hard.
If you had 2 parents with aspergers who don't care about their child's interests then of course the child would feel unimportant, under valued and unloved.

Maybe these couples who strike up relationships from these all aspie sites don't have kids so they don't need to worry?

Speaking for myself I am extremely sensitive and while I'm aware I often voice my opinion without any thought of the other persons feelings I get very upset when people do the same to me. I know that I'm not being mean and I'm just being honest but when someone treats me the same way it feels mean :/

I would love to hear from anyone who has experienced an aspie-aspie relationship or anyone who thinks that you need the balance of dating someone not on the spectrum.