A Stitch in Time…

‘B’ was offered the chance to have sewing lessons a few months back, an opportunity she grabbed with both hands and alot of enthusiasm. A friend has just set up a business, doing alterations, making clothes, crafts etc. She refuses to take payment so we are doing a nice exchange – I set her up with a website and designed her business cards etc. A lovely way to do business huh?

Turns out, ‘B’s a natural! Now armed with her own sewing machine and a whole houseload of fabric, there is no stopping her. In fact, she has her first craft fair on May Day!

I got her some business cards printed, so she can give away with any purchases (that’s optimism for you!), letting people know that any money she makes will ‘feed her habit’ and enable her to buy more fabric!

This is something we have discussed as a possible work opportunity for her when she’s older. I have said to her there are no rules that say you have to do only one thing for a living! I know, I am that person, juggling several different ‘strengths’ to make ends meet.

We are realistic, ‘B’ is never going to be able to hold down a typical 9-5 job. I swear she could sleep through an earthquake, nothing wakes her! ‘B’ dances to the rhythm of her own drum and that drum certainly doesn’t know about timekeeping! So, what better way for her to make a living than doing something she loves and something that won‘t require her to keep an eye on the clock.

So far she’s made bags, hanging hearts & squares, pencil cases, glasses pouches, a stuffed dog and now she is working on an apron…

It’s much better for her than sitting in front of a computer for hours, it keeps her busy and engaged and gives her great satisfaction when something is complete.

I’ll try and get her to photograph some of her creations… that’s another of her passions, photography! She’s starting photography lessons next week. Another friend is exchanging lessons for me teaching them Illustrator! She’s been taking photos for some time and has taken some lovely pictures, very arty stuff! But that’s another Post LOL!

Till next time,

‘B’s Mum

Time Flies…

When we decided to pull ‘B’ out of mainstream education we had no idea how dramatically it would change our lives…

We pulled her out in September 2009, it was a tough decision to make and not one to be taken lightly. My husband wasn’t 100% on board with the idea but ultimately it was mine and ’B’s choice, we were the ones that were going to be doing the work. We were fortunate, in that the work I do (I am self-employed, doing several very different things and don’t have to work full time) made it possible for us to do this, if I had needed to be in full-time employment there would have been no way we could have even contemplated such a move.

I told my husband to trust me and if it didn’t work within a year we could revisit the situation and see what we would do next.

Not only did we have to think about her educational needs but also socialisation amongst many other things. I spent more than a few nights worrying whether we had made the right choice, it was such a responsibility. We found ourselves having to defend our decision to friends and family, who had their own opinions along the lines of ‘Are you sure you know what you’re doing? This is her future, what about qualifications? Do you know how hard it is going to be?’. ‘B’ found her friends asking her constantly about what lessons she does, how long does she work, why doesn’t she have to write things down in books, what is home-ed etc etc etc.

On reflection, when she started nursery and even primary school, everyone commented on how smart she was, how much she knew about so many things, how good her communication skills were and that was down to us working together. I had done it then, so was this really any different?

Looking back, the energy I wasted trying to get the school to understand my daughter’s needs, seeing my daughter so stressed out that she wanted to die (yes, that did happen!), I can honestly say, hand on my heart, that if I had known how much it would change her life, I would have done it years ago. 

So how does the new ‘B’ compare to the old?

She is now a happy, confident, relaxed, outgoing, bubbly 12 year old who isn’t afraid to try new things and go new places. Gone are the meltdowns (we have only had one near-miss in 18 months). She hasn’t been sick once (she used to get sooo stressed, it would make her physically sick at least once a fortnight). In fact she hasn’t even been ill! She likes who she is now.

Her obsessive compulsive behaviour has eased dramatically, we only see it surface on rare occasions and then it is only minor compared to what it used to be. Her anxiety is much better too, she has learnt it is OK to let go and cry every once in a while instead of bottling up her frustration and stressing out. Even her SAD has dramatically improved, mostly because I think she is going with her own natural rhythm, going to bed when she’s tired, waking when she’s had enough sleep and now with puberty not far away her body is changing hormonally.

When we reached one year of home-ed I asked ‘B’ if she wanted to return to school and to my delight she said ‘No way!’. Even my husband agreed she was a different child and that we seemed to be doing OK!

Life is good for all of us right now. We are not planning on ‘B’ taking exams, she can do that when she’s ready and if she needs to to get a job in the field she wants to go into. At the moment we are concentrating on building her a skill set that will enable her to set herself up in business, general life skills, using her strengths and helping her identify and compensate for her weaknesses. We have no plans for her to ever go back to school (alot of people seemed to think we were only doing this temporarily for some strange reason)!

‘B’ still has SID, she will always have SID, I don’t believe there is a cure out there but our children CAN function perfectly well, we just have to help them find their own unique way of life…

Till next time

‘B’s Mum

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

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

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