Taking the plunge

It’s been a hard few weeks. We’ve talked and talked and talked about it. We’ve asked family and friends about it. In some ways it’s been both the hardest and the easiest decision we’ve ever had to make…

What am I talking about? Home Ed.

‘B’ has struggled with school ever since she started going. Without going into any of the finer details, we came to the conclusion that no matter how many meetings we have with the school, no matter how many times I try to explain it (and believe me I’ve lost count of the number of times I have tried to explain it), we just aren’t making any progress at all.

I don’t think ‘B’ can take another winter like the last 3, I don’t think I can either. What everyone seems to forget is that I’m the one who has to pick up all the pieces when it all goes wrong…

It didn’t help that we both had different thoughts on the subject. Ultimately we both want to do what’s best for our daughter. It’s a huge responsibility and it wasn’t a decision that we made lightly.

We’ve started looking into Home Ed a long long time ago, I guess I always had a sneaky feeling this was the road we were going to take at some point. So now we have, what does it feel like? In a word, liberating.

We have tried to fit our square peg into a round hole for so long, now it’s time to make a new hole, one that’s ‘B’ shaped. On those days when she can’t bear to wear any clothes we’ll be doing lessons in her PJ’s!

‘B’ is excited, I’m excited, Dad is wary! He learnt along time ago to trust my instincts, he knows we‘re going to be OK.

We’ll keep the Blog updated with how things progress. I’m now off to write an Educational Philosophy Statement for the LEA, I wonder what I’ll put in it?

Til next time
’B’s Mum

Please Don’t Apologise

The few times I find myself mentioning that my daughter has SID to new people, I have found the first thing they say is: ‘I’m so sorry’. Why are they sorry? I’m not…

Maybe I’d better explain a little more…

It’s obvious from that response that people think there’s something wrong with my child. Actually I like to look at it another way.

My child is unique, sure she has problems but hey don’t we all? I have a relationship with my daughter that is so strong, we know each other so well that we don’t even have to speak to know what the other is thinking. I treat her as a little person, not a kid, a person. I ask her opinion, I respect her thoughts. (Now just because she gets a say in everything doesn’t mean she rules the roost, what it does mean is that we respect her opinions and take that into consideration, after all she is part of our family). She has a totally different perspective on things, she takes notice of things others take for granted, she opens my eyes up to all possibilities, she has a beautiful heart, she truly cares for people. We don’t ignore her. In truth, we probably learn more from her than she does from us.

This has caused some of her friends to envy our relationship because they wish their parents took notice of them in the same way. We are not perfect, we are not always right, but we do work together as a family.

Why on earth would I want to change her? I love her just the way she is, as time goes by she is learning how to adapt to her needs and is doing a great job so far.

So next time you come across someone who has a child with any type of disability, and you feel those words forming on your lips, maybe rethink it: have empathy yes, but please don’t feel sorry for us. We are truly blessed with these children.

Till next time
‘B’s Mum

Sick of the sound of my own voice

I really don’t know why I bother sometimes. I’m sooo fed up with having to explain SID over and over and over and over… for those of you in the same boat you’ll know exactly what I mean.

Why won’t somebody just realise that living with SID and having SID basically in a nutshell means life is hard work, every day is hard work. Having SID is not a game, it’s not about getting your own way, it’s not about being picky…

For anyone about to slide down this slippery slope we call SID World, here are some things you’d better get used to:
1) Explaining SID and it’s impact on your child’s life sooo many times you begin to question your own sanity.
2) Expect no help ’cos that’s basically what you’ll get! Certainly not in the UK anyway.
3) Get used to the idea that no-one really even understands what you are talking about.
4) Prepare yourself for spending alot of your precious time running round and round in circles.
5) Stand your ground, if you’re convinced it’s not Aspergers don’t accept any other diagnosis.
6) Be prepared to defend yourself as to why it’s not Aspergers, oh yes, this will happen.

Till next time
Blessings
‘B’s Mum

And the floodgates did open…

Monday morning… I’m getting ready downstairs, hear ‘B’s alarm clock going off, hear it turned off really quickly, hear footsteps to the bathroom, hear footsteps back from bathroom, hear footsteps on the stairs… mmmm, something not quite right. Usually takes at least half an hour to achieve all that. Door swings open and there we have a rather bedraggled ‘B’, looking something like Alice in Wonderland when she starts crying and flooding the place because she couldn’t stop, bless her.

She cried and cried and cried, I was soaked, had to change tops! Grabbed some Emergency Essence Flower Remedy which was gratefully received – not the usual resistance – and we waited for the storm to calm.

So what brought this on? In one word: ANXIETY. ‘B’ is what they call Sensory Defensive. Her nervous system is basically in a state more commonly known as the Fright or Flight State ALL the time. Can you even imagine what that must feel like?

Since the clocks changed ‘B’ had sprung back into action, happens every year, this last Winter for some reason being especially bad. She’s been doing so well though, a bit too well. Since April she had decided to stay for packed lunch, normally she comes home every day (except swimming day ’cos otherwise we’d be coming back before we’d got home!).

We found coming home for lunch gave her some time to regroup before the afternoon, this has worked really well for her so far. Downside is me having to traipse backwards and forwards to school all day (good job I’m self-employed huh?) but that’s a sacrifice I’m willing to make. It makes sense, a happy ‘B’ equates to a happy Mum!

Back to the story: something had to give. The last few days she hadn’t been quite so ‘bounce out of bed’ more like ‘roll out of bed once I’ve been given a little push’ type of thing. I think the extra stress of being at school all day every day finally took it’s toll on her. Whether she wanted to or not, her body needed to let it all out.

And let it all out she most certainly did. Afterwards she commented that she didn’t understand why she had been crying but that she felt alot better. A day off school was all that was needed to put her back on course. Why a day off? If you had seen her, you wouldn’t be asking this question. She was exhausted, remember it wasn’t just tears that she shed, it was all the anxiety too.

OK, so it’s now Friday and we’ve found the culprit. This is quite usual for us but I think it’s important to find the cause of the anxiety, you can avoid a repeat scenario if you know what sets her off, you know? 2 things: Sports Day, in ‘B’s world, this is on a par with school plays, it’s a performance in front of spectators and that freaks her out! She’s not able to participate and just enjoy the experience, whether a successful outcome or not she should still enjoy it. It’s the combination of the competitiveness, the pressure of coping with people watching, too many people in one place, schoolmates telling her she’s going to make them lose ’cos she’s not a natural-born athlete, that kind of thing.

The 2nd: anxiety about whose class she’s going to be in next school year. They usually leave it until a day or 2 before the end of year, not enough time in SID World to prepare and assimilate. We do plenty of work during the holiday to get her used to the idea but I’m not sure the school truly understands what living with SID is like. Because she appears so ‘normal’ (I hate that word) I think they forget, or maybe don’t even fully accept, that preparation is key to EVERYTHING we do.

Solution: I don’t put my daughter through any more stress than is ABSOLUTELY necessary. I’m the one that has to cope, B’s the one that pays the price. Is it really worth letting her get sooo stressed? You may not agree with me, but I don’t think it is. So, morning off school and a letter explaining the whole situation to her teacher.

Communication is so important, if I am to help the school understand I need to be open and honest with them… Communication with your child is equally important, if they can understand how their body works and why it happened, they can learn to help themselves. In turn it helps them feel that they have some control over the SID, not the other way around, and empowerment is a wonderful tool.

Till next time
Blessings
‘B’s Mum

For once it didn’t go pear-shaped

School holidays – usually not something either ‘B’ or I look forward to. Not because we dread spending time together, quite the opposite actually, she’s in her element when it’s just me and her – it’s the break in routine that does it.

Like alot of children with Autistic Spectrum Disorders (ASD’s), SID kids need their routine, some of them to the point where everything is timed down to the exact minute. Luckily for us ‘B’ isn’t THAT particular but changes in her routine usually flip her out. So, we try to get up the same time, start doing stuff when she would begin her school day, finish when the school day would finish – you get the picture?

Woe betide you if you slip in some spontaneity. SID and spontaneity don’t co-exist nicely, in fact they don’t co-exist AT ALL. EVERYTHING has to be set out the night before, no deviations from the plan. Oh, and just a tip, don’t promise anything either.

Promises are like routine and you will usually end up breaking that promise. You know the kind of thing, ‘I promise we’ll go to the park tomorrow’ and then a freak rainstorm hits, everywhere is cold, wet and waterlogged. SID kids take promises literally. They don’t see the unforeseen events as a reason to break a promise. Even though logically their brain understands you can’t play when the park is flooded, you promised they could go. I think, that’s kinda where the Meltdown may come from, I don’t know, it’s almost like that unforeseen event causes confusion instead of logic, the confusion then leads to frustration and the frustration inevitably leads to Meltdown.

It’s better to word it differently, something along the lines of ‘If we can, maybe we’ll go the Park tomorrow’, even when she says ‘Promise?’ I reinforce it with ‘We’ll try our best OK?’. I’m not promising… so in her mind, logically it will make sense if something crops up and we can’t go. Does that make sense?

Anyway back to the story… First day back at school is usually a practice-run for us. We go through the motions and indeed the intention of getting to school, but realistically we usually end up at Meltdown point and ‘OK let’s try again tomorrow, we’ve had a practice so you know what you’re doing now don’t you?’ kind of thing.

I’ve learnt not to push, I recognise the signs by the body language and the expression on her face. There is absolutely NO POINT in pushing it to a Meltdown, it doesn’t do you any good and it most certainly doesn’t do them any good. You get so you can head a Meltdown off before it gets to boiling point, you just have to learn the art of knowing your child inside out. You know how it will turn out so why push it?

So there we were Monday morning, hoping for a successful departure, not EXPECTING a disaster (that’s negative thinking and they pick up on that, trust me!), more of being prepared for a disaster and… it didn’t happen! ‘B’ actually got to school in one piece and on time and a smile on her face!

This is something we have struggled with EVERY holiday so this was a major step forward. She was really pleased with herself, as was I.

Here’s the irony, that doesn’t mean it’s fixed now, next holiday we could go backwards, with SID you never know what’s coming next. We just try not to think about it, deal with each day as it comes, don’t make any long-term plans and basically go with the flow. If you stress about it you WILL become a mess, better to accept it for what it is and adapt, you’ll get through it much better if you do.

Till next time
Blessings
‘B’s Mum

A different type of normal

Where to start…

OK, I was inspired to start my own Blog after coming to the conclusion that 'If Mohammed won't come to the mountain, the mountain must come to Mohammed’, in this case I’m the mountain and Mohammed is every ‘official’ I seem to have come up against, trying to get them to see that SID is real and if no-one will acknowledge it, how on earth will we ever make it a condition that everyone is familiar with?

In the UK it’s unheard of, to the point where the local Mental Health Trust can’t make a diagnosis (even though they concur with you that’s it’s most likely is SID, after they’ve looked at your research, your reasons for thinking it’s SID, googled official websites to find out more, listened to your arguments why it’s not Aspergers) because it doesn’t even appear on some International List of Disorders that they have to adhere to… I refused to accept what they said was the ‘nearest alternative’ diagnosis: Aspergers, it’s not Aspergers! I was even told to tell her school etc. that it was Aspergers, purely because people now know what it is and have a basic understanding of the condition. So for crying out loud… how is SID going to become better known if we just tell people it’s something else?

So what is SID? It’s not Aspergers, it’s not ADHD and it most certainly is not attention-seeking spoilt brats manipulating poorly-skilled parents. SID is a very complicated condition, I think it’s safe to say that no 2 children who have it are ever going to be alike, it’s heart-breaking from a parent’s point of view and extremely frustrating from the child’s point of view. SID is on the Autistic Spectrum and can co-exist with other conditions like ADHD, Aspergers, OCD, AD, PPD-NOS, SAD, Bi-Polar etc. It takes alot of work, from all sides, not just the sufferer, and just as you think you have finally got something under control, something else pops up and bites you in the butt and creates a whole new set of problems. Even strategies that used to work may one day no longer be a viable option.

When my daughter ‘B’ was first diagnosed, I tried to find a way that a 7 year old could understand it. I used a pasta as an example: when the brain sends a signal to the body, it’s like a message travelling down a long piece of straight spaghetti, it gets to it’s destination with no interruptions or confusion. When the brain sends a signal in someone with SID, it’s like a whole plate of spaghetti, all mixed up, the signal can‘t find it’s way through the tangle of pasta and ends up either in the wrong place or gets lost in the mess. Does that make sense to you?

It’s so easy to feel overwhelmed and defeated with SID, but we’ve always tried to view it as an ‘inconvenience’, if you like, not an all-consuming nightmare. If you try to look at SID as the annoying little side-kick instead of the super-villain, you will come to realise that you’re no different to any other family, it’s just your ‘normal’ is a different ‘type’ of normal…

There’s a wonderful Blog on My Blog List, that I think sums it up better than I could ever do (Pancakes Goes Awry – Friday, October 10, 2008). Please take time to read it, it’s an education.

Blessings till next time
B’s Mum