Little Cotton Rabbits

fighting a loosing battle?

I am not yet winning the battle of the clothes.

I get them on him but within 2 minutes he has flung them all to the four corners of the garden - and he's becoming quite inventive about places to stuff them so I won't find them again! It probably doesn't help that we're having some lovely warm weather - not the best time for me to be insisting on clothes!

Still, on a positive note at least Toby is now starting his bouncing sessions with some clothes on and my quest to get him to keep them on will continue, although I will definitely focus my efforts on stripping off in inappropriate places and save the garden battle for when the weather turns colder again.

Thanks so much for all of the tips and advice left on the previous post about his stripping off. There were some very useful points raised about keeping his clothing soft and light and having a set of clothes that he associates with wearing in the garden - a bit like a bouncing uniform. All of which are really going to help in my quest. I'm hopeful we'll get there - one day! Potty training isn't fairing any better either but we always knew it was going to be a long a slow process for our boy.

His achievements are small and slow but one day I hope to write excitedly here about his first wee on our toilet and maybe even one day in the future I'll be joyfully telling you about his first ever word.

One day.

Maybe?

Hope is a wonderful thing.

annual reviews and getting naked!

Well, Toby's annual statement review is sorted for another year. It was great to hear his teachers say that he's making some progress and having compared notes with them it seems that he's more aware of the world since starting school. Often autistic children are very withdrawn, not making eye contact or even acknowledging the presence of anyone else in the room. They can sit for hours at a time completely lost in a repetitive activity and often strongly resist being touched or held. Toby used to be quite withdrawn and can still get like this when he's extremely stressed. I try and comfort him by touch and a soothing voice but this increases his stress and can result in a full-blown, self-harming outburst. Although it's hard, I've learnt that when Toby withdraws into himself it is best just to give him some space and peace so that he can deal with his stress and I just look for the signs that he's ready to return to our world and accept a little gentle interaction. So, the good news is that he's withdrawing into himself less frequently at school and is noticing more around him. He's also discovering his own opinion and often makes it quite clear - most parents are familiar with this in a normally developing child as the terrible twos!

Anyway, due to this increased awareness school have decided to start toilet training. It could be a long and arduous process but it will be wonderful to ditch the nappies at last and to think that he's moving towards some sense of independance. At home our main target is to tackle the issue of clothing and gradually build up to getting him to wear some! Issues with clothing are typical in autistic children and can include hypersensitivity to certain textures. Toby happily accepts wearing his uniform for school but at home he strips down to his vest and nappy. He also strips when we visit friends and family or even in an indoor play area. Again this is quite common with autistic children - they'll accept something in one location and refuse it in another. It definitely needs tackling because although it's perfectly acceptable for a six year old to wander around half naked, it's quite a different thing for a 6ft teenager and the longer it stays a habit, the harder it will be to change!

So, I'm now on strip-alert and as soon as I see the clothes coming off, I rush to get them back on again quickly. I am not popular at the moment and it will certainly be a challenge!

The wrong destination

Thanks for all of the kind comments about my prototype mouse - I think bigger ears and a pointier nose is the next thing to try out. I also wanted to say that if you fancy revisiting some of the fun songs from your childhood there is a great CD with lots of them on - Nellie the Elephant, The Runaway Train, The Ugly Duckling, The laughing Policeman... and many more although sadly not the Old Amsterdam song. It's called Hello Children Everywhere by EMI records.

Over the next week I need to take a wee blogging break and get some stuff sorted out for Toby. I need to read some stuff and write some stuff and get my head around some other stuff! A friend recently sent me this and I thought I'd share it here as it does sum up many of the feelings that you live with when your child has special needs...

WELCOME TO HOLLAND

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

c1987 by Emily Perl Kingsley. All rights reserved

I landed in 'Holland' four and a half years ago when we had a diagnosis of severe autism confirmed for our 2 year old son.

These days I have moments when I forget that I ever wanted to go to 'Italy' but most of the time I'm still struggling to get to grips with the language and different customs of 'Holland'. Sometimes it needs quite a lot of hard work and some new guide books and I'm at that point right now where I need to go find a quiet corner and read for a bit in the hope of better understanding where I find myself. I've also got lots of paperwork to fill in for his annual statement of educational needs review.

So I'm off for a little break from blogging (just a week or so) to give myself time to concentrate fully on the task in hand.

Gauw tot ziens! (see you soon in Dutch - I think!)

Hello to all of my Dutch friends (especially the lovely Martine)

 

He's got the measure of me!

He may be autistic but my son knows me all too well. He knows that it's no good just trying to pull me upstairs to play bounce-on-the-bed while I'm in the middle of making tea. But taking my knitting bag as a hostage is guaranteed to get me following! What a tinker!

Have a great weekend everyone.

My new apron

As I've mentioned previously my son is severely autistic and although he is now 6 he still scores at a sub 2 year old level for many of his developmental milestones. He's not yet developed any speech at all and has never uttered a recognisable word although he merrily babbles with lots of consonant sounds. How then can he wander over to me and purposefully ask for some chocolate buttons and a maisy video?

Well it's all down to the magic of PECS (the picture exchange communication system). I have talked about it here before so I'm not going to repeat myself but I will say again that PECs has transformed life for our family and given my little boy a 'voice'. For some time now I have been meaning to put in some intensive time to try and develop Toby's use of PECs further. At the moment he uses it confidently to request food, toys, videos and favourite places like the park but I am hoping that one day he will be able to comment on things he sees, hears and thinks and that we may be able to have more of a 2 way conversation.

So you're probably thinking "what has all this got to do with aprons?" Well, let me introduce my new secret weapon...

Lovingly handcrafted from beautiful fabrics and made especially for me by the wonderful Carolyn at Laughing Duck it has 2 perfect pockets for storing PECs cards and strips. When I'm wearing this I have all of the symbols that I need readily available so I can show Toby the symbol for 'wait' while saying it, the symbol for 'plane' when he glances up to look at one passing overhead and generally begin expanding his vocabulary and teaching him by example that he can use symbols to communicate rather than just for requesting things.

It will take time and lots of work to get him there but, as we have no reason to believe that he will ever learn to speak, using PECs is the best way to equip him with the ability to communicate with others. He's been a real star to achieve what he has already with it so I've no doubt we'll get there in the end and Carolyn's gorgeous apron is going to make getting there a lot easier and more fun! Thanks Carolyn!

mice welcome!

Anyone got any mice that they don't want? They'd find a warm welcome here and would save me from having to hoover 18 times a day! Toby is currently having 2 inset days from school and is in a major grated cheese phase. Cubes and lumps don't satisfy and coarse grated doesn't pass muster - only finely grated, easy-to-drop-all-over-the-floor cheese will do!

I know that all kids have food fads but in autistic kids this is often taken to extremes. We've had the 'only eating milky bar buttons' phase (and then only if they are perfectly round - any irregularity discarded), the mini cheddar biscuit phase (again discarding any with broken edges or an irregular shape), the custard cream phase (ditto if not perfectly sandwiched together) and the banana (only if cut into 3 equal parts) phase. How I long to be able to cook a meal and have all 4 of us sit together at a table and eat the same thing - it's a small dream of mine and a work in progress!!

Roll on wednesday!

A big thankyou to the tooth fairy!

If you drop in here regularly you'll know that I do my best to keep my blog focused on the happy aspects of my life and mostly on my knitting. But ocassionally there's a need to give it a little flavour of what is going on in the background as there are times when I struggle to be positive and carefree. So today I'm going to be self-indulgent and get something off my chest so that next time we can go on with the business of knitting and having some gentle fun.

Since Toby was diagnosed as severely autistic (nearly 4 years ago) I've had times where I'd wake each morning with a feeling of expectation and find myself thinking "things will start to get better when..." ...he starts nursery, ...he starts school, ...the summer comes... and thinking in that way is probably a saftey mechanism that has helped me get through some especially tough times. The problem comes when the realisation hits that things haven't got easier and I start to think "what if this is as good as it gets?"

This weekend I realised that I had got through the summer holidays by thinking that once Toby was back at school things would be better - foolish thinking because of course they are not. In fact the last week has been one of the toughest for a long while. For a start Toby slept less well than usual (and usual is bad enough!) but he's also been incredibly restless and demanding and the constant high pitched keening noise that he makes when he's distressed is especially hard to take.

Because Toby can't communicate we were left guessing as to why he was so out of sorts and then on Sunday evening I made a breakthrough! I spotted a wobbly tooth. I don't think it was actually causing him pain - it's just the fact that it felt different and in Toby's world different ain't good!

This kind of sums up autism - that something as simple as loosing a first tooth can cause so much angst and distress and in turn push a family to the edge of reason. We're all very grateful that yesterday the tooth fairy zapped the offending tooth and since then Toby has seemed much happier and actually slept through last night!

* Since the offending tooth has disappeared without trace (probably swallowed) I've had to use a stunt tooth - one of Amy's which the tooth fairy let me borrow (just incase she reads this!)

Books, petitions and autism...(and a few knitted bunnies thrown in for good measure!)

Although this blog is largely about my love of knitting, especially rabbits (had to sneak a quick picture in!), I do write about autism from time to time. I also get to hear from a lot of people who are involved with autism - either directly living with an affected family member or involved in research / campaigning. I recently heard from a wonderful young woman who has written a book about an 8 year old boy with autism. Nicki Mann had many problems at school but has gone on to work with special needs children and is currently training to be a teacher. Her book Danny, Danny Superstar tells the story of an autistic boy, his special needs classmates and their school talent show.

It's a wonderful way to tell other children about some of the difficulties autistic children have. Amy especially likes the story because she identifies with Danny's big sister Lizzy. It would be a great book to read with children who have an autistic relative, classmate or friend as it's a very sensitive and child-friendly introduction to the fact that some children are different. Nikki has self-published the book on lulu so you can either download a copy and print it yourself or order a pre-printed bound copy.

My ramblings about autism aren't based on any intellectual expertise but rather on personal experience and as autism affects every individual in a completely different ways my families' experiences aren't necessarily relevant to anyone else. But there are common issues that affect all autistic people. In this country the National Autistic Society are tireless in campaigning for better understanding of autism and better support for those with the condition.

Campaigning is critical if people with autism and their families are to get a better deal from services and society at large. We work at a national level to champion the rights and interests of people with autism and their families and ensure that policy and legislation reflect their needs: your contribution is vital to achieve positive changes.

They are currently seeking support from the general public in 2 particular areas. If you're in the UK and feel like lending your voice please follow the links below. These are not requests for cash - just petitions that show the weight of public opinion.

National Government:

Petition for more government support for those with autistic spectrum disorders

http://petitions.pm.gov.uk/aspergersupport/

Local Government:

The NAS are also requesting information from each UK local authority on their current provision for children with autistic spectrum disorders. Many local authorities have not yet responded to the questionnaire and so need a kick up the ****. If you fancy delivering a kick, please email me and I'll forward the email on to you (I can't get the link to work here!)

Thanks so much for reading and for your support.

Shadow Play

Recently I've been spending far too much of my time in a darkened room. No, it's not due to a migraine or  a hangover or even an overdose of knitting! It's all due to Toby's love of a game.

It came about by accident really. Toby has bounced on our bed since he was old enough to stand (it's a wonder that the springs haven't completely gone) and one night back in winter he decided to do it in the dark. He (like many autistic children) is stimulated by watching fast movement and he loves spinning light wands so we've always kept a variety of these in our bedroom along with 3 disco balls and various torches (just incase we wanted a disco in the middle of the night - you know!). Anyway, while he was bouncing in the dark I shone a torch from behind him and projected his shadow onto a flat wall of white painted cupboards and he loved it!

Toby has never really shown much interest in his reflection. I think he might just beginning to realise that it's him in the mirror.  Amy on the other hand was posing in front of the mirror from the time she started walking and still can't walk past one without pausing to check how she looks (I know - it'll only get worse!). It does seem though that Toby has made friends with his shadow. Maybe it's something to do with it being a flat shape or that it doesn't look back at him - I'm not really sure but it's magical to see him interracting with it.

He has twigged that when he moves his arm his shadow does too and he's now actually playing with his shadow, wiggling his fingers, running up to it and then away again to see it get smaller and bigger and seemingly understanding that it is him.  When I turn off the torch he claps to indicate he wants the torch on again, a clear communication for more (and all intentional communication from Toby is a bonus). Toby has definitely discovered his shadow and that it is 'connected' to him. This awareness is a new thing and brings him more into our world.

We've played this all winter - which is fine when it's dark and cold outside but now the evenings are longer and sunnier it's wearing a little thin (for me at least). So spare a thought for me on the upcoming balmy summer evenings, for while you sit in the early evening sun sipping your chilled glass of wine, I shall be sat in the dark, torch in hand, making my little chap a happy one!

Swinging in the rain

Well the rain appeared (afterall it was a Bank Holiday, so rain is expected!) but Toby was undeterred and continued bouncing and swinging regardless (minus trousers and nappy of course!)

He loves the garden and we have lots of sensory type things dotted about - things that twizzle, spin and generally catch his eye. He is highly stimulated by fast movement and so when the wind catches these and sets them in motion he dances on his toes delightedly whilst appreciatively making excited whooping noises.

Towards to end of the day the rain stopped and we had a fabulous sky at sunset. The garden smelt wonderful - all damp grass and spring blossomy and my little guy couldn't have been happier. Some days it feels that autism is a curse but then moments like this make me realise that Toby is unencumbered by material issues and that simple pleasures rule his world, and, if we can provide these for him, he may well grow up to live a happier and more fulfilled life than most.

The boy likes bubbles!

I had to share these pictures of Toby sporting a bubble afro in the bath. He has a real thing for bubbles - likes to eat them too and drink gallons of bathwater and always has a major fat nappy about half an hour after his bath! Often autistic kids are compelled to eat strange things - I'll spare you some of the more disgusting items he's consumed but some of his previous snacks have consisted of dirt, leaves, erasers, twigs, soap, crayons and a pair of Barbie shoes! It's one of the reasons I keep him constantly in my sight and why I often have little teeth marks on my fingers from hooking out offending items as quickly as possible! Still, with a face that cute you just have to forgive him!

Watch out, watch out, there's a Toby about!

You can always tell when Toby has been in a room. For a start there's a tell-tale trail of crumbs from his constant munching (he 'grazes' all day), then there's another trail of discarded clothing (he'll not wear trousers or socks in the house) but the biggest give-away is the little stacks. Everywhere he goes he is compelled to stack items. It always makes me smile as I wander round the house after he's gone off to school which is something I need to do today. This last week he's been very distressed to leave his beloved lego stack at home (school won't allow him to take it as it 'distracts' him). It's hard to wrench it off him in the mornings and drag him to the school bus crying and screaming while trying to reassure him that lego will be there after school. I'm looking at the battered and chewed lego now, sitting on his little table ready to  be taken up and 'loved' when he gets home- who knew lego could be a snuggly?

Bouncing without trousers!

We had a funny weekend (funny peculiar not funny ha ha!). As Toby gets older and becomes more aware of the world outside his insular one he's beginning to find changes to routine harder to cope with. He's also developing a stronger will so although he's 5 years old he's really just hitting the terrible two's tantrum phase - if he wants something and doesn't get it we know all about it!  Anyway, Saturday was a nightmare day. Toby was very unsettled - probably because he'd had only 2 days back at school and then along comes the weekend (that is NOT his routine!). There was much crying, screaming, flinging and fussing and he ruled the roost with the rest of us mostly doing his bidding in an attempt to have a quiet(ish) life. He finally went to bed at 11pm and we rolled in soon after, completely shattered. So on Sunday we decided to keep busy and got up early to go swimming. The local pool does a fun family session with waves and floats. The kids had a great time but once again we were reminded just how different life is when you're living with autism. I looked around me at all those happy children, chattering and laughing and playing with their mums and dads and there was Toby - happy as anything, drinking great gulps of pool water, oblivious to all but the ripples in the water and literally screaming with excitement at the waves. I'm long used to 'funny looks' and stares from others but it is hard when your child is so obviously different and people make an effort to move away from you. We came home to lunch and then Toby spent the afternoon on his trampoline in the garden.

Fun you might think - well yes, but Toby has to bounce with no socks and no trousers and it was raining lightly. It goes against all my maternal instincts to let him stay outside for 3 hours and bounce with no trousers in the winter rain but then I'm learning that flexibility is the key to surviving with autism and if he's happy then we all are! (and I bundled 4 tops on him so he looked like the michelin man with 2 stick legs!) I think my New Year's resolution this year is to have the confidence to go with my gut instinct and not worry so much what others think, afterall what counts is your kids happiness not the judgement of others. A lofty ambition for me, but I feel so supported by all of you who read and comment on my blog that I might just achieve it. Thanks so much for reading my whitterings and commenting - it means a lot to me!

Passionate about PECs

And no I don't mean the rippling muscle variety, although come to think about it I am pretty passionate about those too - but that's an entirely different story. I mean the Picture Exchange Communication System which is what Toby has learnt to use so he can communicate his basic needs.

One of the first indications of there being something amiss with Toby's development was that he just failed to develop speech. He'd been early to do all the physical stuff - walking at 11 months etc but though he'd been babbling all those precursors to speech like bababa, mamama and dadada he seemed stuck there and his speech just never materialised. Toby was 2 years old by the time we got the diagnosis of Autism and he still had no form of communication whatsoever. He didn't point, wave or gesture in any way in fact he didn't have any way of communicating anything. I used to guess when he was hungry, thirsty or tired and when I got it wrong life was miserable for us all. Getting a diagnosis is a battle in itself and for many families it can take over a year to get to a point where a professional is prepared to put anything definite in writing. This is an agonising time for families as there is very little support available to children without a confirmed diagnosis. Even with a diagnosis we were facing a wait of 6 months to get an initial consultation with a speech therapist to assess Toby's needs. It was time for action.

Thankfully the internet is fabulous as a resource and I spent hours every evening reading all about language development, autism and various intervention methods. There is a lot out there to sift through. I looked into some of the more intensive interventions (ABA and Son-rise) but with Amy's needs to consider as well it didn't seem possible to commit the considerable time and expense that both of these entailed. PECs on the other hand was based on a simple theory that anyone with a bit of dedication and determination could put into practice. I ordered the manual, computer software and all the materials that we needed and we started as soon as they arrived. The first PECs card we ever made was for milky bar buttons and although it was slow to begin with, by Christmas Toby had 4 additional symbols that he could exchange without prompting. He's gone from strength to strength and is now able to construct very simple sentences to request food, drink, toys, dvd's and a few simple activities.

If anyone out there has a non-verbal child I would encourage them to look into PECs. It's widely used in the USA and Canada and is becoming more widespread over here. It's certainly transformed life for my little boy and I can't express how thrilling it is to see him walk purposefully to his book, browse his symbols, compose his sentence and bring it to me to ask me for a custard cream and drink. Without PECs life would be a whole lot harder and more frustrating for him.

For more info on PECS see here.

On a knitting note, my moo cards arrived - printed via my pics on flickr. I'm so pleased with them but am having difficulty parting with any at the moment!

For those of you who've asked, moo cards are cute little contact cards that you can order straight off any photos that you upload to flickr. They're around 7cm long by 2.8cm wide and you can get 100 (of whichever of your photos you want - all different or all the same). You can customise the back to give your contact details and hand them out to all of your friends. It's free to open a flickr account and upload photos and the moo cards were quite cheap - around $24 per 100. Also, for those who've kindly asked about buying my rabbits - I'm afraid that there won't be anymore for 2006. I'm planning to make as many as possible over the next month and put some into my 'shop' in the New Year. Will post glimpses between then and now and let everyone know beforehand when they'll be available - thanks so much for your interest.

 

Spinning and a polar bear.

This week I have been mostly knitting rabbits. Been catching up with orders and still finishing off those ballerinas. Because each rabbit takes at least 2 days to make it's difficult for me to take on many orders but it is something I like doing because it encourages new ideas. I really enjoyed making this little bear. 'Pearl the polar bear' was a commission for a lovely Lady called Jacqueline (who by the way has the loveliest shop - if you like anything to do with tea & coffee then check it out). She just said a bear, sea-colours and left the rest to me (my favourite kind of brief!) I'd just bought some beautiful pure silk yarn (Debbie Bliss) it's gorgeously soft and sheeny and seemed perfect for the job. I think I'll try and make a few rabbits in the same yarn with sequinned dresses - a kind of 'Princess' range.

I'm busy trying to prepare for half-term next week. I have a good stock of colouring books for Amy - she loves Rosie Flo books (the bodies are drawn in and you just add heads, arms and legs) and we've got some new blocks on order for Toby. His absolute favourite toy is a stacking pyramid but it's getting a bit battered. He 'liberated' it from nursery last July and since then it's gone everywhere with him - he even cuddles it in bed (I know it's the most peculiar cuddly toy ever!). Huw has finished Toby's birthday present from us and installed it. It's a big wooden spinning disc ('scuse my unfinished mural!).

Toby is particulary stimulated by fast movement. Most autistic children have an area of hightened sensory stimulation - can be auditory, visual, tactile etc... Toby is definitely most stimulated by the visual. He's always been excited by watching the wheels of cars go by, watching motorbiking on the telly (takes after Daddy there!) and he loves spinning things, ball runs etc. He adores this disc and gets very close to it squealing with delight as it spins. Personally I get very dizzy when I look at it - it's definitely not one to play with after a bottle of wine!

Normal service is resumed...

Thanks so much everyone for your very touching comments. As it turns out we had a pretty good day.

Toby really enjoyed his cake and his absolute favourite presents are a wooden marble run and a disco ball. Amy is coveting the disco ball but is content to share it and of course we had to have a disco which turned into 2 hours of dancing to her pop junior cd with the lights off and the disco ball going. She even made signs for the door: Closd for Privat Party and insisted I made fruit cocktails (orange juice with a slice of lemon, icecube and twizzle stick).
When we woke up this morning it was one of those perfect autumn mornings that I love so much - all misty and still with dew dripping off everything.

It is the small things that give pleasure, dancing with children, indulging their fantasies and the beauty of nature. Thanks again for thinking of us x.

A bittersweet day

First a warning - please don't read this post if you're feeling down. Pop back tomorrow for something a bit more upbeat. If however you have an interest in living with autism please read on...

Today is Toby's 5th birthday. Normally children's birthdays are a busy affair; a party, lots of presents, friends and lots of excitement on the part of the birthday boy or girl. Not so with Toby. Toby's birthdays come and go without him being any the wiser. He gets to eat more cake than usual (something he definitely appreciates), he gets some new stuff and he does quite like balloons but other than that he's completely unaware of the significance. I on the other hand find this day one of the most significant in my year. It's probably the hardest day for me and one I never manage to journey without tears.

It's impossible for me to get through this day without reflecting on what might have been had he not been autistic, what it would be like to have a normal family life and to be able to do normal family things all together. I mourn for his lost future - you never realise how much you take your children's future for granted (that they will grow, find a life-partner, have kids of their own and live mostly happy, fulfilling lives) until it's gone. Toby does have a future but it's a world away from what I would wish for him. It's uncertain and dependant upon others. I hope to always be around to care for Toby but I'm mindful of the fact that I'm 35 years older than him and it's so frightening to think that I may not be here to look after him for as long as he needs me.

His birthday is also a marker, a measure if you like of his progess and development. Autistic children have characteristically spikey developmental profiles. Which means that whilst he has the physical abilities of any 5 year-old, in some areas such as speech, play and social interaction he still scores at a 12-18 month old level. Only time will tell wether he will ever develop speech. He is making progress with communication using a picture exchange method (more of that another day) and so there is a hope that his speech development is just grossly delayed.

I carry my sadness deep inside and most of the year I genuinely feel mostly cheerful. I feel very lucky to be able to appreciate beauty and joy in small things such as the changing seasons, a beautiful sky, the song of a blackbird, Amy's laughter and Toby's hugs. This is the one day a year when it spills over and I let it. You need one day a year of self-indulgent melancholy - it's not good for the soul to bottle up any strong emotion. So forgive me my wallowing and please don't be put off visiting here again. I don't usually talk about how I feel like this but somehow it seems easier and a bit theraputic to write it down, a bit like making a paper boat and launching your troubles down a river on it - or maybe it's because the delete key is only a click away and so I can erase all this if I chicken out!

As Amy will tell you, one of my favourite sayings is "you have a choice in life..." something which I strongly believe. Today I am choosing to allow myself to feel sad, tomorrow I will be choosing to feel happy. So on a happy note here are some pics of Toby enjoying his summer...

knitting in funny places!

One of the things about having an autistic child is that you end up doing things at the oddest times. Part of the reason that I started making small items rather than people-sized jumpers is that when Toby is around I can usually only get a few rows done at any one time. He is very demanding and constantly pulls both Huw and myself around the house. I carry my knitting bag with me (usually with an odd assortment of things inside - I always look in there when I can't find the T.V. remote control) and end up being a knitting nomad. I knit in the bathroom (when he's having his bath I usually manage to knit the bottom of a cake or a sleeve for a rabbit jumper),  I knit sitting on his bedroom floor, halfway up the stairs, on the wall in the garden, in the playhouse halfway up the climbing frame, infact the only place I draw the line at is the loo - I do have some limits!

I love Baby Einstein videos because Toby adores them and so for the 28 minutes of running time I'm usually free to sit and can knit up a rabbit head. Autistic children often have difficulty making the distinction between day and night and Toby is no exception. Most nights he's awake for at least an hour - sometimes as long as 4! This is all good knitting time as he's tired and content to stack his pyramid or watch videos until the need for sleep overcomes him. I often get my biggest chunk of uninterrupted knitting time in the wee small hours - this is why knitting keeps me sane - it distracts me from focusing too deeply on the fact I'd much rather be in my bed!

Have taken some pics of jumpers that I made for the kids when Toby was still little - just to prove I can knit big!

autism insights and knitted stockings

Poor old Toby's been a bit under the weather this weekend. I think it's just a cold but it's not always that easy to tell. Sometimes it's hard to tell even if he is unwell and even when you establish that he is, it's usually impossible to say for certain whether he has a headache, earache, sore throat or all of the above because he just can't tell me where it hurts. There is a theory about autism known as mindblindness which sums all this up pretty well: autistic people assume that everyone knows what they are thinking so they don't understand the need to communicate that they're hungry, cold, in pain etc. Toby has never pointed at anything (a common autistic trait) nor has he ever drawn my attention to anything he is interested in. It is exactly like he just assumes I already know. One time I found him just standing in his room, all tangled up with the cord on his roman blind - he'd been upstairs for 20 minutes and I'd assumed he was playing quietly - goodness knows how long he'd been stuck but the point is he didn't utter a sound to get my attention, just stood there waiting for me. I felt like such a bad mummy and needless to say I don't really let him out of my sight anymore. Anyway, after 3 nights of little sleep because he was so snuffly, he's seeming a little better today and he's gone back to school.

I have written up the pattern for the stockings - hopefully in some kind of understandable knitting jargon. I've added some photos to show certain steps and will be improving on these and adding some pattern design suggestions shortly. If you are feeling adventurous and fancy giving it a go please drop me a note and let me know how you got on (this is my first foray into pattern writing - I usually work off scribbled notes and memory!) Similarly if you try it and get stuck just contact me and I'll try to help. Good luck!!!

On autism & shopping

One of the most frustrating things about autism is the lack of communication. I can't tell Toby stuff as he doesn't comprehend language. I couldn't tell him that he was going to school, how long he'd be there and that I'd be missing him every second that he was gone. Toby is at distance from the world we know - this picture pretty much sums it up

 

Having said that he is coping very well with starting school this week. He's been a little blotchy around the eyes on his arrival home each afternoon (a sure sign of tears during the day) and he was bitten by one of the other children but on the whole he's pretty relaxed considering how monumentally upended his secure little world has been.

Toby & I do have an wonderful non-verbal language of our own involving touch, hugs, kisses and giggles. He gives big cuddles and fat, wet kisses as soon as he gets home and snuggles into my lap with a contentment that clearly communicates he's pleased to see me. He can communicate his basic needs through PECS where he brings a picture of the thing he wants to me. As you can imagine though this is pretty limited (mostly to food and toys) but I hope as he grows he'll be able to expand his vocabulary and communicate more about how he feels, maybe one day he may even learn to speak. For now I'm just happy that he's managed the big step of starting school so well. The old chestnut 'Live one day at a time' is the motto in our house.

on a lighter note:

I love this time of year as it heralds the arrival of lots of fat glossy mail order catalogues. I am addicted - much to Huw's disgust as he spends 10 mins searching through the stacks for his mail. There are so many beautiful things out there and I like to browse and pick out what I'd buy if money were no object. Sometimes I actually order stuff!! In fact at the moment I am in the lovely position of having a wad of birthday money to spend (having turned 40 in August!). So just recently have treated myself to a beautiful new knitting bag

(courtesy of Cath Kidston)

and a wonderful pair of gardening shoes from the fabulous Plantstuff.

 

Am now off to enjoying perusing the selection of catalogues that arrived today.