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

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

We did it our way…

Been a while since my last Blog, been trying to get our heads around where/how to start our home-ed, trying to get into a rhythm which took longer than I anticipated (maybe that was just my naivety), but in the end it just kinda feel into place by itself…

College began in September: I’ve had one daytime class to teach and one (out of possibly two) nightclasses to teach. Add to that one course (nightclass) I’ve had to do. Try to squeeze in some Design Work. Clinic on a Tuesday (trying to build up a Healing Practice) and most important of all, home-edding ’B’.

Now I feel we’re left ironing out the bumps!

I have to be honest, it didn’t all go smoothly in the very beginning. Gave her 6 weeks to get school and school-ways out of her head (and mine!). After half-term it was time to get cracking but to my horror I was faced with a very resistant daughter! I told her that if this was going to work then she needed to co-operate and work with me.

As a teacher I am aware of different learning styles and it seemed logical to work out ‘B’s style so I could deliver her education in the most effective way. We’ve taken a few weeks trying different methods and I think we finally cracked it at the weekend.

’B’ struggles to write anything down, her brain goes faster than her hands, she sees it in her head how she wants it to look and it never comes out that way. With ‘B’, it has to be right, there is no compromise, no inbetween, if it doesn’t come out like it looks in her head then she gets cross with herself and inevitably stomps off! Also the sound of a pencil/pen on the paper is akin to us hearing someone scrape chalk across a chalkboard, it’s a painful audio experience, remember ’B’s got incredibly sensitive hearing!

She can type really fast for a 10 year old so most of the time I get her to type out her work.

We’ve been studying blood this week and used one of her favourite resources, the whiteboard. I’ve found delivering her work in bitesize pieces works best for us, just dig out the hard facts, forget about ifs, ands and buts and enhancements. We created a kind of flowchart and it worked great. She retained the information and enjoyed the whole process!

So here’s where I nearly came unstuck, OK so how to save this flowchart so we can build up learning evidence for the Local Education Authority? Obviously too big to scan! Tried photographing it, couldn’t get it all in focus – it’s an A2 whiteboard! Tried to get her to try and write it in her book – not going to work either.

Was talking to my sis-in-law about how to proceed. She said what about sticky labels? Went home pondering on that one, mmm, had potential but needed more thought. Anyway I was wandering around Tesco on Sunday and there it was, right in front of me, Post-It Notes!!!!!!!

Arrived home with a very large supply of Post-It Notes. Simple, just recreate the flowchart using Post-It’s. She loved it, said it was fun and when could we do the next one? Sorted!!!!!

It’s so simple that it should have been the first thing I thought of. If she made a mess or a mistake it was easily remedied, new Post-It Note. If it didn’t all fit properly on the page when she finished, we simply repositioned it. Then all she had to do was put in the connecting lines. And it looked really neat too (she hates it if it doesn’t look neat).

We have our first meeting with the LEA on her birthday in a few days. I was dreading it, thinking they were going to crucify us because we hadn’t done enough work etc etc but now I feel we’re going to be OK. We now have a plan of action in place. So wish us luck, we’ll let you know how it goes!

Till next time
’B’s Mum

When is a chip not a chip?

You may be thinking, strange question?

In SID Land, it’s not so strange.

Eating is something that ‘B’ has been doing well with, since we told her she would be home-ed she has been able to try new foods, new textures, new colours etc. Great progress!

It’s easy to fall into a false sense of security with SID, you know, just as you think you’ve got on top of something, another ‘thing’ will take it’s place or an old one will spring back up into action, so don’t be fooled into thinking it’s fixed, it just might… there is a small chance you’ve cracked it… but it just might come back.

‘B’ likes to go for lunch on a Sunday at the local Supermarket cafe, a small miracle in itself but that’s another story. Apart from not coping when they insist in putting her chips in a bowl even though they should be used to her coming in by now, but last weekend they changed the shape of the chips. Now to a ‘normal’ child, a chip is a chip, right? Not to an SID child, like alot of children with any aspect of Autism (Spectrum or not) the spontaneous change of the appearance of an up until now accepted food is a big deal. They had gone from ‘normal’ chip shape to big flat ones, needless to say those chips didn’t make the journey to ‘B’s stomach!

This got me thinking, so I have compiled a useful (well I hope it may prove useful) list of things to consider when faced with trying to feed your non-eating/fussy-eater SID child.

1) Texture
Look at the food your child does eat, is there a common theme with texture? Take ‘B’ for example, she is Sensory Defensive, she doesn’t like anything in her mouth for more than a second, she needs foods that don’t require alot of chewing. Hence she eats lots of what I call slimy foods, foods that can be swallowed quickly. She can’t eat tuna or rice without being sick, think about it, they are dry, they don‘t slide down the throat!

2) Colour
After talking to other Mums with SID children, it appears alot of them like yellow foods. I haven’t a clue why. Maybe visually yellow is an inoffensive colour, it doesn’t hurt the eyes? I don’t know for sure, but ‘B’ was definitely a yellow foods girl! I’m happy to report that we now will also eat green foods.

3) Shape
As pointed out above, shape is important. Again, circles seems to be an acceptable shape. Think about this, circles have no edges, maybe edges cause problems in the chewing process? Others will only eat something if it is chopped into tiny pieces, this may be because they have an over-sensitive oral system that can’t handle tiny pieces, because again, they don’t require as much chewing.

4) Together Foods
I didn’t know what else to call this section LOL! For a long time ‘B’ would only eat her food if each component was on a different plate. It is a well known fact that Autistic children will freak out if their foods are touching.

5) Temperature
Again ‘B’ likes all of her food room temperature. Doesn’t matter what they are meant to be, hot or cold, she’ll only eat them when they are at room temperature. Again think about it, bland foods eaten at bland temperatures. Spicy food children may only eat hot foods and never touch cold foods. Ice cream children may only eat really cold foods. Get it?

6) Utensils
Does your child try to eat everything with a spoon? Even things that don’t require one? There is a reason for this, if they do, it’s all about making sure the food goes ‘down the hatch’ without touching the sides! I don’t worry what ‘B’ uses to eat with, as long as it’s not dangerous obviously, it may look strange to me but if she’s comfortable with it, so am I. Look at the plates you use, are they plain, do they have a picture, which one does your child use the most? Shapes and colours of cups are just as important, as are drinking straws. Just be observant and find your child’s pattern.

7) Where to eat
There is alot of pressure on people to make sure everyone eats at the same table for meals. There are so many reasons why this is hard for an SID child.
a) Contamination
Someone else breathing over their foods equates to contamination.
b) Concentration
‘B’ eats more and best when she is in front of the TV. The TV provides a distraction for her so she is not solely concentrating on her food. Without this distraction eating becomes a huge ordeal for her.
c) Eating Habits
Other people’s eating habits, particularly other small children who don’t necessarily have great table skills. Things like eating with mouths open, getting food all over themselves, people talking whilst eating – these are all things that can cause an SID child great stress.

I’ve obviously only really given examples of our own experiences. I can’t stress enough that the key to getting on top of SID, I think, is really get to know your child (inside and out)! Forget about what is expected from society, what the parenting books say you should be doing, what others expect of you. Your ‘normal’ is just a different type of normal to others.

I’m of the opinion that we shouldn’t be trying to get them to fit into our world, we should be looking at how to fit into theirs. Put yourself in their shoes, do you really think they do this on purpose? You know, in your heart, they don’t!

It takes time and patience, but believe me, you will find a pattern. This pattern is as unique as every child that has SID, no two are going to be the same.

Till next time
‘B’s Mum

Seasons come, seasons go…

and in SID land we meet the incoming seasons with some trepidation!

Why?

Changing seasons have a funny effect on our little SID folk, particularly summer to autumn and winter to spring. It’s not just the change in temperature, we also have the clocks to contend with.

So what happens? Bear in mind that SID kids’ brains are out of sync, their brains don’t always interpret the messages the way they should.

Example: In winter you’ll probably see ‘B’ insisting on wearing flip-flops, shorts, short sleeves and insisting that it’s too hot for a coat. If you feel her hands, she’s actually warm and toasty! In the spring she’ll put on her winter coat, button it up to the top, get out her boots and gloves and insist she’s freezing cold.

OK, so it does conjure up an amusing picture but it’s really not that funny. Their internal thermostats are running amok, their external bodies can sense a change in temperature and humidity but the brain is insisting the opposite.

Clock changes in our house take about a month to adjust to, her body clock refuses to get into sync (and why should it, they are after all known as the out of sync children LOL), so we have ‘B’ not only dressing inappropriately, but wanting to do so at the time her internal clock tells her to.

This year is different for us in that ‘B’ is now home-schooled. This at least means that when her body refuses to wake up she can at least let it sleep. In theory this should help as she will be able to follow her own rhythm instead of the clocks! That’s the theory anyway, we’ll let you know what happens in reality.

Till next time
‘B’s Mum

This could be the straw that broke the camel’s back

Forgive me for digressing from the usual theme of my posts but I have to get something off my chest.

Last night I think I may have wasted 3 hours of my life… and unfortunately I’m probably going to waste another 3 hours every week for the next 11 weeks!

How? I have been teaching at the local college for the last 4 or 5 years (can’t remember exactly). I got involved in teaching as a way of passing on the knowledge I’ve gained in 21 odd years in graphic design. Our ‘hopelessly out of touch’ Government decided that all non-qualified teachers have to do a PTLLS* course by 2010 or give up teaching.

This course is supposed to prepare us to teach!!!!! From what I saw last night I’m not sure I want to teach anymore. No wonder our kids are leaving places that are meant to prepare them for a career with no idea of what they’re doing…

I don’t want to be turned into an academic. I don’t want to waste precious hours of my life filling out paperwork in triplicate. I just want to share my knowledge to help prepare people to work in the graphic design industry. I don’t want to think until my head feels like it’s going to burst.

At the moment I’m not sure I’m going to see this course through. I’m not a quitter, I love learning, my head is full of ‘stuff’ that I’ve accumulated over the years but this just seems so far removed from what I do and how I do it. I’m not perfect and I’m not the best teacher in the world but I get the result I set out to achieve.

OK so rants over, I’ll get back to some real work.
Till next time
’B’s Mum

*PTLLS – Preparation to Teach in the Life Long Sector

Rome wasn’t built in a day

OK, so although school started this week, we haven’t started home-ed yet…

‘B’ needs time… time to adjust. Remember we’ve only just decided to home-ed. I think the reality of it kicked in (for both us) on Tuesday. We were getting ready to drop ‘B’s dad off to do a Mind Body Spirit Fayre, we were loading up the car and I think it was then that ‘B’ noticed everyone going to school (and it hit home). Me, I had to shake the feeling that she wasn’t ‘skiving’, I know it sounds silly, but I did have to remind myself that I don’t have to run around in the shadows, I can stand tall and proud and say ‘we home-ed’ if anyone challenges us.

It was then that I realised how much conditioning has been going on, for all of us. We need time to get our heads out of the traditional educational pattern and get ourselves into our pattern, and that our pattern is going to be ‘B’-shaped! What does ’B’-shape look like? Mmm, kinda random and certainly unusual!!!!

At the end of last week I was convinced I needed to be more organised and get some sort of semblance of order if this was going to work. Today I’m thinking, why on earth did I think that? We don’t have to follow any timetable or curriculum, we can literally just go with the flow…

We’ve already experienced a certain amount of liberation from our previous constraints, in the form of ‘B’s newly opened willingness to try new things and her new found ability to be able to get into the car and actually go somewhere without having a panic attack or not being able to get out of the bathroom until she’d been to the toilet 20 times (and then if she lost count we would have to start again or in most cases just give up and stay home). We went to Southwold’s Maize Maze and had a wonderful time, it’s been sooo long since we’ve been able to go anywhere further than 20 minutes away, in fact, that outing has turned into one of our first home-ed projects, she took loads of photos and asked loads of questions… this is a way she enjoys learning…

’B’ was also a stickler for routine, as with most children with any type of Autistic tendencies. Again this hit me out of the blue, a new word for us… spontaneity. Yes, we have achieved this a few times already. I think I’m beginning to see the full impact of the stress she’s been under, I knew she struggled with school, but I’m seeing a whole new ‘B’ emerging already, things can only get better right? I’d rather have a happy laid-back ’B’ than the little girl that was around this time last year!

As my title says, Rome wasn’t built in a day… we just need a little time.

I’ve a feeling we’re going to be OK.

Till next time
‘B’s Mum