Saturday, 23 October 2010

Tick Tock, Tick Tock

Yesterday whilst at college something happened that made me smile!

A student had arrived for his class very late, his tutor asked him why he was so late. The response was something along the lines of ‘I was still in bed’. The tutor firmly reminded him that he knew what time his class was and that still being in bed was not a good enough excuse. The student (by now sitting on the floor) was then reminded that bearing in mind that he was late and that he knew what he was supposed to be doing, it would be a good idea to sit at a computer and get on with it.
Why did that make me smile? This student as far as I know has some form of Autism…

This scenario reminded me of our life. Autism (of any form) and clock-watching don’t go hand in hand. I’ve often told her that I will be shocked if she can keep a job when she is older as she has absolutely no concept of time. That sounds harsh doesn’t it, but those of you who live with people on the spectrum will know exactly what I mean (I hope!).

Getting her out of the door when she’s supposed to be somewhere at a set time is like mission impossible. Yes, we’ve tried getting her up earlier, we’re tried giving her a timer, a clock, we’ve tried it all… and alarm clocks!!!!! She doesn’t even hear them. We could have thirty of them and she still wouldn’t hear them! Honestly, when she is finally asleep she’s out cold.

It all comes down to one thing really, time doesn’t exist for these children. They do things when they are ready to do them, not when you want them to do them!

In theory, it’s a lovely thought isn’t it? Doing things when we’re ready to do them? Practically, obviously it doesn’t work… imagine turning up for work at the supermarket halfway through the day and there’s hundreds of people waiting for you to open the doors! Imagine a doctor’s surgery where the patients and the doctors turn up when they feel like it. Imagine plans taking off when the pilot felt ready to get into the plane.

OK, so having said that they do things when they are ready to do them, they don’t actually do it on purpose. They get just as frustrated as we do, ‘B’ often says she doesn’t mean it to happen but she just doesn’t get why time is so important. She even knows that getting up earlier won’t work but she doesn’t know why it won’t work. In her world she thinks she’s on schedule! Good job I have a fairly flexible timetable but not all of us have that luxury.

But seriously, I do wonder how she will cope in the big wide world. She’s really, really smart but her timekeeping is not going to help her hold a job down. Knowing what our school experiences were like, do bosses even exist that could comprehend something like this?

Till next time
‘B’s Mum

Thursday, 20 May 2010

Can a girl really have too many clothes?

If she’s got SID then the answer is most definitely YES!

It sometimes feels as if clothes are the most evil thing on the planet in our house. Why? Clothes can drive ‘B’, and me, come to that, almost to the point of insanity. I have to say, she has come a long way on this one but I decided to blog about it because it used to be a huge problem for us.

There is no successful formula for this one. Depending on what she’s going to be doing, where she’s going, who she’s with, how sensitive her skin is that day, we can end up abandoning everything because they don't feel right. It may sound funny but it’s not, this is a very real problem, especially on those days when she can’t bear to wear anything!

She wouldn’t throw out anything either. So when she was having one of those days, she would trying on everything, and I mean, everything! Even if it meant trying to stuff her foot into a shoe that was 3 sizes too small, it just might have worked! She knew it wouldn’t fit because she’d grown but had to try anyway. But this in turn leads to frustration because after a while, having tried everything in her wardrobe her sensory system is in freefall, it doesn’t know what works anymore.

Wardrobe 101!

Don’t force them to wear anything! Even if the weather dictates a certain type of clothing, let them go with what they feel comfortable with. A child will not let themselves freeze, they will ask for a coat if they need it. ‘B’ likes to wrap herself in a blanket rather than wear a coat, if she does wear a coat it can’t be fastened up it has to be open!

Don’t pick their clothes for them, let them choose what works for that moment in time. Even if the pattern or colour doesn’t co-ordinate, the priority is to feel comfortable!

Choose a wardrobe of clothes that meets all possible sensory needs (something tight, loose, floaty, constricting, heavy, light etc. etc.)

If possible try to limit the amount of clothes. Too many clothes to choose from can cause mental confusion which will lead to frustration which can lead to meltdown.

Get your child to hold swatches of different fabrics in their pockets and see their reaction or ask them how that one feels. It works best if they aren’t looking at it, they may get distracted by the colour or design of the fabric, you really need to know how it feels. For ‘B’ we found nylon actually made her angry! Heavy fabrics made her un-cooperative.

Don't fall into the trap of buying loads of an item in different sizes in the hope that ’cos she’s been living in that outfit for weeks that it will last. As quickly as you breath, that favourite outfit can suddenly be like wearing a suit of armour, it hurts, it scratches, it’s poke, it’s too tight, it’s too heavy, the stitching isn’t quite the same.

Even having more than one of something and trying to slip one into the washing machine, sneakily replacing it with an identical one (that you have pre-washed and crumpled a bit because they know that new smell and crisp finish), no that won’t fool her, not even for a second. She knows it’s not the same one!
We wash our clothes with eco-friendly chemical-free unperfumed washing liquids. Sometimes the smell of chemicals can drive them nuts. For some, they may need 3 times as much fabric conditioner to make them soft enough, others may like that starchy feel. ’B’ doesn’t like her clothes ironed, she likes them crumpled. Some will only tolerate garden-dried washing, the tumble dryer making them smell funny. When they constantly complain about a previously acceptable outfit and the only thing that has changed is that you have washed it, honestly, just look at how you do your washing and try something different.

Hope that helps a little!
Till next time
‘B’s Mum

Sunday, 14 March 2010

Mother's Day

Today in the UK is Mother's Day.

When 'B' was little we celebrated it just like every other kiddie does, she was too young to explain my reasoning then. But as 'B' got older I explained to her that I don't expect presents and cards on this or any other day.

I don't need thanks for being her Mum, it's a job I enjoy and embrace fully. Sure we've had tough times but we've always come out the other side stronger and better prepared. I don't need a card or a present to know that she loves me. She tells me that in the little things she does every day, like coming up and giving me a big hug, for the way she looks at me when she's having ‘one of those days’, when she prefers to hang out with me than go play with friends, when she says ‘I love you Mum, you're the best!’, that sort of thing.

I don't buy into the whole consumerism thing: buying someone a present because somewhere someone decided it was a good way to make money.

You should buy a present because you really want to, not because it's expected of you. Sometime last year she came home from a day with her Nan and presented me with a pair of earrings that she knew I liked but didn’t have the money for at the time, they weren’t expensive I just didn’t have any cash left that day. Her Nan had given her some money to spend and she wanted to spend it on me, how sweet was that?

We're off to watch Alice in Wonderland this afternoon, just me and ‘B’, it just so happens to have fallen on Mothers Day. This is something we have been looking forward to doing since we heard about the film being made. We both love Tim Burton's films and Johnny Depp is obviously an added bonus. This is the sort of thing I like, when my daughter and I spend time together like this, she wants to be there with me and I with her.

Oh dear, has this come out sounding sugary-sickly? I hope not. My point is, if you love someone you can tell them that any time you want. Sometimes words are all it takes.

Till next time
‘B’s Mum

Thursday, 25 February 2010

Can't wait for Spring

It feels like it's been a long, long winter!

'B' suffers from SAD (Seasonal Affective Disorder) and the wintery months usually affect her really badly. She sleeps ALL the time, eats for England, doesn't want to to go anywhere, do anything and probably the worst bit (for a child and come to that a Mum too), she gets horribly depressed. Or should I say, USED to.

Since we pulled her out of school we have noticed massive changes in 'B', the obssessive compulsive behaviour that accompanied her SID has virtually disappeared and it looks like the SAD has significantly improved too.

This year she has required no medication, she
was taking herbal medicine when she felt she needed it! She hasn't been depressed although she is tiring of Winter now (aren't we all?). She is still eating for England, but that's no bad thing, she has always struggled to put weight on and I now feel she is looking a much healthier size.

She still sleeps alot but seeing as she doesn't have to get up at any particular time, she can sleep when she needs it. We've found that she has fallen into a natural rhythm, going to bed really really late and getting up late. As she doesn't have to go to school and I can pretty much work my own hours, this is working for both of us.

We haven't been out much but in the last few weeks she has wanted to go outside just for a little bit every day. Getting enough sunlight is important for SAD sufferers, boosts the brain chemicals. Sunlight is believed to play a big part in the brain's production of key hormones (seratonin and melatonin).

This is a huge turnaround for us all. Pulling her out of school has inadvertently eased the SAD. How? I think because she has been able to live by her own natural rhythm! It's a bit like hibernating, you know? Animals slow their metabolisms down, they store food, the sleep much longer than any other time of the year. SAD always seemed to me like a kind of hybernation. Not all animals hibernate, most don't, but why can't humans be the same? Some just need to hibernate.

Spring is now in sight and we are looking forward to getting out and about.

I have started to change the lightbulbs in our house, it won't be long before we have no choice in the UK. In the last year I have been trying these energy-saving bulbs. What concerns me, amongst other things that I won't go into here, is the effect it will have on 'B'. We only have lights on in the house when we need them, with the traditional bulb you turn it on and you instantly have light. With these new bulbs you have to wait and wait and wait until they build up enough light, after a few months you'll notice that they don't seem anywhere as bright either. We pretty much used 40W bulbs but to kick out the same amount of light with these new ones, it looks like we are going to have to use a much higher equivalent (what would equate to the old 100W bulbs) and keep them on pretty much all night. Energy-saving?

Why am I concerned about the effect on 'B'? The amount of light these bulbs kick out is not enough! She has a sdecial daylight bulb in her room, along with her SAD lightbox. Light is important, if the whole house is dim it stands to reason it will have a direct effect on her. I've googled this and it seems that no-one has taken this into account. The decision has been made and that's that! This IS going to have a huge impact on SAD sufferers.

I'm not a pessimist by any means but the future doesn't look bright (not with energy saving lightbulbs anyway) LOL! I guess I'm going to have to stockpile. Just how many lightbulbs can you get in a cupboard under the stairs, I guess I'll have to find out!

OK, time to get off my soapbox!
Till next time
'B's Mum