Bang!

I have often said that with SID, as much as you like think that you finally have an issue under control, another will take it’s place and bite you in the ass! Today was one of those days. I have to say, we have been lucky, those times are fewer and further between than they used to be!


So what prompted this one? Earrings!!! ‘B’ has been adamant since she managed to get a new pair of earrings in, that only she is changing them. She has let me help her a couple of times and insisted that I hurt her. I tried explaining that it takes a little bit of practice to find where the hole is, anyone who has pierced ears will understand what I mean by this.


The last couple of days she has struggled to find the hole and has made it a little sore. Yesterday she couldn’t get one of them in but she would not let me help. Today was the same… We had to go pick her dad up from work and as is perfectly usual, we were running behind, she didn’t get up very early and was doing her usual ‘I’ll do it a minute and stop hassling me’ routine.


The main culprit was that damned earring. Do you think she would let me help? Could she make up her mind if she was staying at home whilst I went and got him? No… instead she dug her heels in and started getting angrier and angrier. Eventually she wanted me to do it, but wouldn’t let me within 6 feet of her. I asked her to wait until we got back, so we could go get her dad. No! That apparently wouldn’t make any difference?????!!!


I explained to her, that yes it would, because at least I wouldn’t have her dad having a go at me for being late, yet again! He gets grumpy… and then I have 2 of them on my case! I get it in the neck for her not being able to get out on time!


All I got in response was an increasingly angrier ‘B’ telling me it wasn’t her fault and to stop confusing her. I explained again, trying to keep calm, it’s quite simple… we need to go get your dad so the earrings will have to wait.


I was getting frustrated, she just refused to listen to the logic of the situation. In her brain, that earring took precedence over everything. The repercussions of being late and thus him being angry that we were late again were of no consequence.


I guess, she just pushed me too far. For once in my life, I would like to be on time for something. I am late for everything… I haven’t been too well lately and I guess I’m feeling a bit defeated, especially when after asking if she was finally ready, I was told in no uncertain terms how much she hated me!


Ouch! That hurt! Normally I wouldn’t let it get to me, I know it’s the frustration talking… and I’m ashamed to say I lost my temper. I get ratty and grumpy but I don’t actually lose my temper very often. So, I stomped down the stairs, slammed a door and fumed within. I didn’t say a word to her, she shouted at me for slamming the door, she screamed at me for making her do this, she cried and cried all the way there.


We got back and I went for a walk, I had to get some distance. I felt bad for losing my cool… I beat myself up over it. But then I thought, hang on a minute, should I feel so guilty? Am I not allowed, every once in a while, to get angry? ‘B’ doesn’t worry about losing it, her dad doesn’t worry about it!


If I was the kind of mum that ignored her child, that didn’t allow her child an opinion, that left her to fend for herself, that neglected her, that didn’t consider her feelings, that just didn’t care… but I bend over backwards and forwards and sometimes inside out to help my daughter and I’m only human, I’m not perfect, I’m just as flawed as the next person. I get it wrong sometimes… and today was just one of those days. And that, is think was the important bit of the whole thing… sometimes she expects too much of me!


When I got home we had a hug and an apology and everything is back to normal! Normal?????? That’s too funny…

Ear we go again…

About 4 years ago ‘B’ wanted to have her ears pierced. We explained to the lady who pierced them that she was on the Spectrum and could she please smell the antiseptic wipes, show her the piercing equipment to be used etc. etc., which she was more than happy to do. It was all part of the process as those of you who have kids on the Spectrum only know too well. ‘B’ was very brave throughout the whole thing, even though she so wanted to do it, it was still terrifying for her. In fact she cried throughout the whole process, the piercer telling her she could have a special deal that day, half price, I am sure because she felt so sorry for her!

Anyway, the 6 weeks healing went by and we realised the basic flaw in our plan… having them pierced was one thing, getting the trainer earrings out, was entirely another situation, one we most certainly hadn’t anticipated!

Try as I might, and even though she understood the logic and implications of the whole thing, (which I think made it even worse for her because she got frustrated at her own illogical responses) we couldn’t get them out. About a year later they started to get infected and unfortunately I had to almost pin her to the ground, screaming her lungs out and yank them out. To her dismay they closed up almost immediately.

OK, so a couple of years went by, she told me she wanted to give it another try. We talked and talked and talked, her case being made stronger by the fact that she knew what to expect this time so it would be easier and she was 2 years older. To be fair, I could see her point…

Also, it was one of those things she was so determined to do, I think in hindsight she wanted to prove to herself she could be ‘normal’, do the same as her friends and it would all work out ok. So call me a fool, I eventually gave in.

She didn’t cry, in fact, she wanted to take them out after 2 weeks (but they hadn’t fully healed). I guess I should have let her…

Yesterday morning (almost a year and a half after the event), I was getting ready for work, she came downstairs very flustered and obviously upset. I only have two 2-hour classes a week and she had to go pick one of them to lose control! Turned out the earring had slipped into her ear… we had no choice, it had to come out, if I had left it and the weeping dried up it would have started to heal over and we would never get it out. She was so scared, stressed and hysterical that I couldn’t have taken her to her friends as normal when I work, I would have ended up having to go get her.

I’m surprised nobody called the police, the amount of screaming coming from our house… but eventually it came out. The other took the rest of the day to think about and an hour and a half of ‘practising’ late last night, thankfully that one eventually just popped off.

Have we learnt our lesson? We have agreed neither of us wants to go through that again… so fingers crossed we have.

Tonight is being spent trying to get a fresh pair in! Wish us luck…

Till next time
‘B’s Mum

Addendum: Took us several hours of ‘practising’ to get some new ones in but she wasn’t having it. The holes are closing up way too fast, she heals ridiculously quickly, so time is of the essence. It looks like we aren’t going to get any new ones in… boy, is she cross with herself!!!!!! She kept muttering ‘stupid ears, stupid holes, stupid SID!’ or words to that effect LOL!

OK, so just as I finished this addendum… ‘B’ walks in and says “Mum, I need to get new earrings in…”. So, we go off to my room, sit down and she just does it… SIMPLE OR WHAT? She’s now feeling rather silly for making such a fuss…

Benjamin’s School

I just had to Blog about this project!

http://www.benjaminfoundation.co.uk/service/benjmins-school

I never thought we would ever consider ‘B’ going back to school! Well, maybe that statement is not strictly true. I most certainly couldn’t envisage ‘B’ ever returning to conventional school. But we have just heard of a new type of school, a school that sounds like the stuff dreams are made of…

They call it an ‘out of the box’ approach (the ‘box’ being a classroom) and I have to say, from what we’ve read so far, ‘B’ seems keen enough to warrant a deeper look! And to be honest, I too am keen to get involved. This sort of project is just my kind of thing!

One thing ‘B’ has said to me recently is that although she has her best friend (also home-educated), it would be nice to have some more friends. Only thing is, ‘B’ tends to prefer older children, always has. Her best friend has said the same.

It seems to me that there are two basic types of home-educated families. Those that are happy to get together with other families and share resources etc. and those that really prefer to do their own thing and be left alone to do it. There is nothing wrong with either of these approaches… but it does make finding other families to connect with hard. In the 18 months or so we’ve been at home we’ve only really come across half a dozen families, if that, in our immediate area. There are definitely more families out there, but it looks like they are the ones that prefer anonymity.

So attending somewhere like Benjamin’s School could help on that level too!

The project is still in it’s infancy at the moment but we will watch closely to see how it unfolds. An project like this has so much potential!

Till next time

‘B’s Mum

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