Little Cotton Rabbits

A walk in the woods

 

A notable achievement for Toby who, despite being somewhere new and unexpected, surprised and delighted me by walking for 15 minutes without fussing or tantrums - 15 minutes I will treasure and remember for a long time!

World Autism Awareness Day

Today is World Autism Awareness day and people all over the world are trying to increase awareness in the hope of fostering better understanding, tolerance and inclusion for those with autism. My 7 year old son is severely autistic and despite living with this diagnosis for over 5 years we still struggle to cope with the enormity of it all and the impact his autism has had on our family. It's frightening to read that more children will be diagnosed with autism this year in the developed world than with diabetes, cancer, & AIDS combined.

Since starting my blog I've been very lucky to have had contact with many other parents of autistic children and the sharing of experiences and information has been invaluable. Having an autistic child is not something that you really learn to cope with or get over. You are torn in two because you adore your child and yet at the same dearly wish you could banish their autism. At the same time autism makes them who they are. You learn to live one day at a time and try not to fear the future. If you're interested and have 7 minutes to spare there is a video here made by mums of autistic children which gives a glimpse into some aspects of daily life.

I write about Toby's autism in the hope that sharing my experiences will help other parents in the same position and also with the aim of giving anyone with no personal experience of autism a little understanding of the condition. Understanding helps promote tolerance in the general community and hopefully means less judgement and hostility towards people who are different and more inclusion generally. We don't need to change autistic people, just our attitude towards them. As always I'm hugely grateful for the tolerance and understanding that always meets me here, but then you are an enlightened and big-hearted crowd and I love you for that. Thanks x

PS: I've added a new page with a little information on Autism here.

zen and the art of autistic toilet training

I have been a bit grumpy recently and, when I think about it, it has a lot to do with Toby's toilet training. It's been 10 long months of hard work without achieving very much and it's wearying in the extreme!

When we first started to take him out of nappies back in early spring he just held it in all day which is not so great for although this shows excellent bladder control he wasn't learning to go when he needed to. By the time he got home from school he was obviously bursting and I had to resist the urge to whip a nappy on him the minute he came through the door. Instead I used to shadow his every move and attempt to divert him to the toilet before a puddle situation developed. He doesn't respond well to any adult directed activity so being made to sit didn't impress him a whole lot (in other words he had supercell, screaming meltdowns) and most days we're both in tears within half an hour of him arriving home and to top it all we ended up with a puddle anyway! In those early days he hated the toilet and I did too! 

All through the summer when he was running around naked in the garden he'd just stop and water the grass and to honest there wasn't much I could do about it although we did try and get him to wee in a bucket to get him used to the idea of weeing into a receptacle!

When the days started to turn colder as autumn arrived he was inside the house more than outside and there were around 6 or 7 puddles a day to mop up. Then we had a little breakthrough in that he started to wee over the side of the bath (although not perfect, a much better prospect than puddle mopping!) He started this all by himself and was quite insistent on shutting the door and having some privacy. I have a feeling I might be responsible for confusing things for him as I'd been saying in a loud and encouraging way 'Toby wee wee' everytime he did a wee while having a bath each night. My intention was to get him to associate the word with the action but I think it may just have reinforced that peeing into the bath is the way to go! I really should know better as I'm well aware that an autistic mind is often extremely literal!

Now I shall have to do a bit of creative thinking to persuade him to switch to the toilet! The fact that he is actually weeing on the toilet fairly consistently at school now is very encouraging but again this is common autistic behaviour - to understand something in one setting and yet be unable to apply the same thing in a different place.

With Toby I have learnt to approach everything in very small steps and it's only when you look back that you begin to realise they were actually leading in the right direction - just not a very direct route! I dread to think about how we'll tackle poo - for now it's a nappy situation and I'll need to marshall my reserves before we try and get him to use the toilet for that! Someone told me to expect toilet training to take at least 2-4 years and I have a feeling they could be spot on!

My main advice to anyone starting toilet training a special needs child is to de-stress your life as much as possible before you start and be prepared to go with the flow (sorry about the pun). The hardest thing is to keep going even when you feel that you're getting nowhere. I'm glad though that after 10 months it finally begins to feel like we may be edging slowly closer to our goal of getting our 7 year old son out of nappies and I remain confident that we will get there one day.

Incidentally, while we're on the subject I know that toileting issues are not limited to children with special needs and that many families experience the anguish and stress of continence problems. Recently Mary sent me some information about the wonderful work of the charity E.R.I.C .

"About 1 in 12 young people in the UK struggle with bedwetting, daytime wetting, constipation and soiling (sometimes called incontinence or continence problems). At ERIC, we know how worrying and stressful these difficulties can be.

That’s why ERIC is dedicated to supporting children and young people, their families and health professionals. We provide information, confidential support, services and resources. Something can often be done to make a positive difference and ERIC is here to help!"

It's worth taking a look at this video which does such a great job of explaining their work here.

Thanks for reading x

Summertime, time for a break

This is a snapshot from yesterday - our first day of the school break. One naked son in the paddling pool, one lovely daughter drawing and playing in the tent and one mummy enjoying a little knitting in the shade. Sounds idyllic and this moment was, but I know over the next 6 weeks these relaxing moments may be few and far between.

I do find this time of year a difficult one. At the school gate all the mums were chatting excitedly about their plans for the summer break; visits to parks, picnics, holidays at the beach and so on. I stood there and said nothing because to be honest the thought of the long break makes me feel a little sick. Although I like the  calmer pace of mornings (no school rush) Toby has a hard time with the change in routine. His autism makes it really hard to do much of the normal family stuff and when we do go anywhere he needs to be so closely supervised to keep him from harm that poor old Amy gets no attention. He's not good with crowds, new places or loud noises and is oblivious to obvious dangers like lakes, busy roads, going off with strangers etc. Often when we go somewhere he freaks out and we have to come straight back home which is really unfair on Amy and makes everyone feel miserable.

This year we decided not to go away on a family holiday and so we're based at home for the 6 week break. Hopefully here things will be quiet and manageable although even at home Toby needs constant attention to keep him safe. Amy has a few clubs and activities to go to and she & I have planned a few overnight camping trips with friends and in the garden. I'm really lucky to have my Mum and Dad to visit - we'll go and stay for a few days and they'll entertain the children, take us to new places and generally help out.

Anyway, with all this in mind I've decided to have a summer blog break and concentrate fully on the children. I will be popping some little cotton rabbits and friends into my etsy shop from time to time and Amy will have fun helping me pack them up and take them to the post office.

I hope you'll pop back and see us in the autumn when I should have news of the baby hedgehogs and some chat about what we've been up to.

Wishing you a lovely August wherever you are and whatever you're doing,

Julie x

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!