Emotional Roller Coaster

So, B has been at College for a little while now and it's been one heck of a roller coaster ride for her, and me!

I am so proud of her for sticking with it. I know there have been many times when she has wanted to just pack it all in, days that have been so damn hard for her to face, days when I have wanted to cry for her but having said that, there have also been some awesome days!

Sensory-wise she has coped pretty well, over the years she has developed her own set of coping skills. Anxiety-wise and OCD-wise things have been tough.

We didn't know what challenges, if any, we were going to be faced with. Note I said, WE not SHE, we're in this thing together, it's a team effort and always will be!

Unfortunately her Anxiety reached peak levels, and Anxiety's best friend, OCD, likes to come and play too on days like this. The Anxiety/OCD combo is so bad that she can't handle me going home whilst she's at College, the stress of worrying about me driving home is too much for her to cope with. So what do I do? I sit in the car and wait, that's what I do! My priority right now is to help her settle into College and if this is the only way we can do it, then that's how it is.

Her stress over my welfare comes from several things. Firstly, my health. Over the last few years I have spontaneously found myself rushed to hospital and during my stays have invariably ended up much worse, due to my intolerance of medications, what is supposed to make you feel better tends to work the opposite way with me. Plus we have had quite a few near misses in the car, where it seems I am invisible or something, so many cars just pulling out in front of us! Add into that, an incident, when I was taking her dad to an appointment and she didn't hear me say I was staying, instead of coming home and picking him up later, plus my forgetting to turn my phone on... when we returned she was in a terrible state, her brain had gone over so many scenarios, all of them bad, that since then she hasn't let me out of her sight. I guess you could say, I am her obsession right now.

She is having counselling at College, a step forwards as up until now, B wouldn't entertain the idea, but she has realised that this current situation is not healthy for either of us. It seems she has gone through what is equivalent to a terror event/PTSD. I know it sounds crazy, but when you remember that she is primarily Sensory Defensive, (her nervous system is on high alert most of the time) and the OCD behaviour, it makes sense. To your average person this would have simply been a stressful one-off, for her, it's HUGE.

I've always referred to the obsessive stuff as obsessive compulsive BEHAVIOUR as we've always believed it was just that, behaviour, as opposed to Disorder but it looks likely that somewhere along the way, she has indeed fallen into full blown OCD. We are now waiting on a formal Assessment and will see where that leads us...

But back to College... she has shown such an incredible inner strength to keep going. Her course is challenging, well for anyone with a Spectrum it would be, it's a Carousel course, so they keep swapping to something else every 6 weeks or so and the timetable is never the same two weeks running, sometimes she can be done for the day by lunchtime! But she has managed it!

The College staff have been excellent, very supportive and in fact some of her tutors have children themselves who suffer from OCD, Anxiety and/or being on the Spectrum, so they know only too well how difficult life can be from first-hand experience. This is actually a good thing, as B feels they 'get it'.

And to put the icing on the cake, she's getting Merits in most of her Tasks... I mean, look at this wall she built last week...

Till next time
B's Mum

End of an Era

Well, tomorrow my baby girl goes off to College for her Taster Day, preparation for when she starts her Painting & Decorating Course in September.

This is a huge step for B. She has been out of mainstream education for 6 years now so there are lots of challenges ahead for her.

For the most part, she has so far handled it all pretty well. We've had the drama of not being able to find workwear small enough for her size 6 frame but we did eventually find a boilersuit that fits her about 95%! As anyone reading this, whose child suffers with the dreaded oversensitivity to clothing, knows only too well, not only did we have to find something that fit but something that wouldn't send her into Sensory Overload. For the last 6 years we haven't had much issue with clothing, mostly because on those days when it was an issue, she simply stayed home in her pj's!

She has to be there for 9am sharp tomorrow morning and this is another huge challenge! I know some of you will be smiling here too, knowing how Time and SPD are not the best of friends!

College is a big deal for most of our teenagers. A new environment where they are encouraged to make their own decisions instead of being told what to do and when to do it, can be a daunting prospect. Add SPD into the mix and it can be an incredibly stressful prospect.

She even said to me the other day, that she wondered what she was thinking, could she really pull this off, could she actually do the Course? My reply? You don't know until you try and if you don't try, you'll only regret it later. Just think, if you can pull it off... the world is your oyster! And if you can't... well at least you gave it a damn good try and we'll just sit down and have a rethink, it's not the end of the world.

Wish us luck
Till next time
B's Mum

This is just beautiful...

I just had to share this.... it just popped up on my Facebook Newsfeed... so beautifully written by someone who has managed to articulate what it's like to live with someone on the Spectrum...

https://dirtynakedandhappy.wordpress.com/2015/03/03/i-stand-quietly-istandquietly/

It brought tears to my eyes... so much of it I could relate to...

A perfect piece for those of you who don't know what it is like but would like to try and understand better... please read it and share it...

How Time Flies

Well... it has certainly been a while since I last posted.

I started this Blog in the hope that there might be something contained within that would help or support other families who have children with Sensory Processing Disorder... so mostly the posts would occur when we hit one of those many bumps in the road and how we navigated our way through it.

Seeing the dates I last posted made me realise just how well 'B' has been doing. For those of you with younger children, when you have those 'off' days, when you think you are at your lowest point, please take heart... IT DOES GET BETTER.

As I've often said to other families, with maturity comes coping skills. Much of 'B's Meltdowns came from frustration, not having the vocabulary or the knowledge to explain what was going on in her head. As she got older, she could understand better how she worked and found ways, usually by her own volition, to cope.

'B' is 16 tomorrow! 16! I can hardly believe she is now a young woman. I am so proud of her, it hasn't been easy for her and I know anyone reading this will understand why. She has come so far and has managed to overcome or find ways around most of the issues that caused her so much distress when she was little.

That doesn't mean everything is perfect. Her biggest issue at the moment is mostly Anxiety which tends to manifest itself with Obsessive Compulsive Behaviour. It drives her mad, it drives us both mad. She is terrified something is going to happen to me. I have been poorly over the last few years, admitted to hospital several times. Unfortunately for me, when that happens, I tend to get worse once given drugs that are supposed to help me, I am someone who has severe reactions to drugs, you know the ones they list on the leaflets that come with the prescriptions. As you can imagine, me going to hospital doesn't help her feel better, it scares the crap out of her, as she knows I will react to something they give me. And we have had so many near misses in the car this last year, I think I must drive an invisible car, people just pulling into our lane, nearly going into us, it's been crazy!

So, as you can see, this doesn't help with her Anxiety. This is the issue we are working on now. For now, she is my shadow, quite literally I turn around and nearly step on her! It's not healthy, we both know it but we are working on it. She has her phone, she can phone me whenever she needs to, which is quite frequently! This one is a tricky one to be honest, my health issues have manifested into her stress issues.

But... this is a million miles away from where our journey first started... so take heart! It really does get better.

Till next time
'B's Mum

To vaccinate or not…

There seems to be alot of controversy as to whether or not we vaccinate our children. Some feel this should be mandatory whilst others believe we have a right to protect our children. Both sides have even shouted it amount to child abuse – either for not protecting their child from or for subjecting their child to the vaccines.

With the internet being such an important research tool, it is so much easier to find out more about these things than our ancestors were ever able to.

I have been researching this issue alot lately and there is alot of finger pointing going on. Those that have vaccinated their children are blaming those that choose not to as being the source of recent epidemics. There seems to be alot of research that suggests that a huge percentage of vaccinated children are getting these diseases. Doesn’t that say something? Why are those who have had their children vaccinated pointing fingers? Surely if they are vaccinated then they are far less likely to contract said disease? The answer seems to be to increase the amount of vaccinations or as some are suggesting currently, to give these vaccinations from birth. The thing that stands out the most for me on this subject, is that surely this proves if anything that these vaccinations aren’t anywhere near as effective as they are claimed to be. And if they aren‘t as effective then why give even more doses?

And therein lies the problem. We all know we are lied to, everyone has their own agenda, politicians, big pharma, etc etc. If we could truly trust the Powers-That-Be we wouldn’t be in this predicament would we? When we are faced with the truth we can make decisions with total confidence.

And what exactly goes into these vaccines? There are reports of heavy metals, fetal tissue etc. etc. We have a right surely to know what we are putting into our own and our children’s bodies!

Not only do we have the issue of whether these vaccinations work effectively but we also have doubts over the side-effects that some believe come from vaccinations.

As a parent we are asked to trust our medical professionals and give permission for everything they want to throw at us. I for one, do not want my daughter being used as a guinea pig.

Take the cervical cancer jab – if you do your homework you will see that it MAY help protect against a disease that MAY cause cancer. It doesn’t protect against cervical cancer directly. The initial disease in question is something that the body usually deals with by itself. Personally I would like to see the long term effects of this jab before I even consider my daughter having it. ‘B’ is coming up for 14, I have let her decide whether she wants it or not. She has read the research I have shown her, giving both sides of the argument, I want her to be as informed as I possibly can. She has decided that no way is that jab being given to her! After all, they said thalidomide was safe!

I have read many accounts of the possible side-effects of this jab and have even personally encountered people who have experienced them or know someone who has. Alot of it never makes the mainstream media. And many of those who speak out about it are then discredited, throwing doubt on their claims.

The flu jab – again, do your homework. The typical flu jab is created by predicting the 3 most common flu types LIKELY to flare up the FOLLOWING year! How on earth can you predict something like that? Again I have heard of so many side-effects.

And we are not talking about temporary side-effects, alot of those being reported are long term or permanent.

The MMR jab is another controversial jab. Some claim that it causes Autism. I have always felt that Autism is like cancer, we are born with these cells and something triggers them, this is my personal theory. Anyway, what I can tell you is our story. ‘B’ couldn’t have the MMR jab when she was meant to as she was having allergy problems and was on a strict dairy-free diet (amongst other things). As the vaccine was egg-based it was decided too risky to give it to her then. I don’t recall now how it came about, but by the time the other children were getting their booster shots, the Doctor she was under, decided she could have the jab. I didn’t know any better then… I trusted the medical profession! All I can tell you is that when I traced back the start of ‘B’s behavioural issues it took me back to the timeline of when she had the jab. Now I am not saying one way or another that this jab triggered her Autistic Spectrum Disorder but it IS possible. Alot of Autistic children are found to have alot of heavy metals in their systems!

Going back to my earlier comment about blaming unvaccinated children for disease outbreaks, ‘B’ actually contracted German Measles from a little girl who had just had her shot! She was at playgroup and like most toddlers she was very affectionate, she saw her little friend and gave her a kiss and by the next day ended up at the Doctors covered in spots. The Doctor asked if she had been vaccinated, I explained why she hadn’t and he asked if she had come into contact with anyone who had German Measles. I contacted the mum of the little girl, worried that my daughter may have accidentally given her little one German Measles and that was how I discovered that her little girl had had her jab that day. My point? Why not advise parents of recently vaccinated children to stay at home for a few days? No vaccine is 100% effective so surely there is responsibility on both sides?

I am actually now recovering from what now appears to have been whooping cough. It has been a nasty experience, some days I really didn’t care if I didn’t wake up, I have never coughed so hard and so much in my life. I am now approaching my 5th month and am slowly getting there. But having said that, I wouldn’t now be looking to go get myself vaccinated… but that’s my choice and I have my own reasons for that. The problem with whooping cough is that it is only contagious very early on and largely gets misdiagnosed so by the time you realise you have it you have already infected potentially hundreds of people. But again, doesn’t this suggest a responsibility from the medical profession to not just fob people off with the old gem, ‘it’s only a virus’! Better diagnosis would help.

I recently became an Auntie and my brother and his wife and I were talking about vaccinations. I have to say I am so glad I am not a new parent! The dilemma as to whether to vaccinate or not is not a decision I would want to make. Their little bodies are subjected to so many more jabs than ‘B’ was. Ultimately you have to make your own choice and to be able to live with it in the unlikely event that your child either experiences a serious side-effect or contracts one of these diseases. Not a choice to make lightly…

I can’t tell you whether you should vaccinate or not, but what I would say is keep an open mind and do some research…

Don’t you know it’s important to have an education?

Don’t you know it’s important to have an education?

You are ruining your chances of getting a job.

Why don’t you have lessons?

It’s important to go to school.

You are ruining your life…

I swear if I hear these phrases one more time I will scream!

‘B’ belongs to several websites, some of which she plays on, others she chats on, like most kids her age. She has made friends with a few people but she has become very hesistant to mention that she is home-educated when they ask what she did at school, why she is up so late on a school night etc. etc. Why? Because as soon as she mentions it, she is bombarded with these types of questions or negative comments.

They simply won’t respect that everyone has a choice and this is our choice (note I said OUR choice). She has to justify why and how and what she is doing. Most seem to think she is ruining her life. They simply don’t get it…

Initially I pulled ‘B’ out of school because they clearly had no idea how to help children on the spectrum survive the school system, their so-called experts not having a clue about the intracacies of our children’s lives, trying with all their might to tick those precious boxes they love so much. But to be honest, the deeper I dug the more disillusioned I became with the whole education system, most of it based on targets and budgets. I wanted my child to be able to have her own opinion, I wanted her to feel she has some value to add to society instead of constantly being compared to her peers in terms of what they deemed as successful. I wanted her to be able to solve problems, to think outside the box, to learn through investigation and experience, to be able to understand the true function or importance of something in relation to the real world. I wanted her to be… well quite simply… herself!

These people get very angry with her because she doesn’t have traditional lessons. Her learning is embedded into activities, we have no need for lessons. They condemn her because she isn’t taking exams. She finds it all overwhelming… we never ask them to justify why they feel the need to go to school, doubtless if we did ask them, the reply would be something along the lines of ‘Because that’s what I’m told to do, that’s what we are meant to do.’ Some of them have turned quite nasty and been very unkind to her… she is neither stupid or idle!

As the saying goes, there’s more than one way to skin a cat and that’s the premise we are working on… we didn’t go into this blindly, we know what we are doing. For example, she is only 12 but we have already put the wheels in motion for long-term work experience once she is 14 (health and safety rules). She has many ideas of her own how to secure self-employment, even at this age. I have faith in her, she isn’t going to rot on the heap, she knows it takes hard work and she’s willing to do it too. She also knows that to be successful isn’t dependent on how much you earn or what kind of house you live in or car you drive, it’s much more than that.

And to be honest, if you ask around, alot of home-educators, like myself, are teachers anyway. What does that say about the education system?

HOME-EDUCATING AND PROUD TO BE DOING SO!

Till next time

‘B’s Mum

Fireworks

Sorry, this blog post is going to take the form of a good old fashioned moan… I HATE this time of year and it’s because of one thing… FIREWORKS!

Why, oh why, do they have to be so loud?

We live literally a 3 minute walk from the beach and every year we have to endure various fireworks displays, one that takes place during the summer at the end of the annual Clifftop Gala. 2 years ago I found myself actually filing a complaint… the fireworks were sooo loud, everything shook – the dog, my daughter, the floors, the whole house! I’m not one to complain, not usually, but this was too much. The bangs were more like you imagine full-on explosions in a war zone would be like. ‘B’ was terrified and that was what prompted the complaint, I had never seen her so scared, she couldn’t stop shaking for hours, she was hysterical with fear.

Then you have Hallowe’en and Bonfire Night. Last night there were bangers and then ‘screamers’, lots and lots of them (supposedly the grand finale ’cos after that ‘burst’ it all stopped). The whole thing went on for the best part of an hour and a half of constant fireworks. You could smell the smoke from them in the garden, they were that close! Heaven only knows where they were being set off but they were way too close for comfort. Again I had ‘B’ in a right old state, shaking and in floods of tears.

I don’t have a problem with people enjoying themselves but it’s about time they were banned in built-up areas. My daughter can’t be the only one that gets distressed.

Fingers crossed it is raining cats and dogs tonight!

Til’ next time

‘B’s Mum

A Sheldon Moment…

For those of you familiar with the TV comedy The Big Bang Theory, you will get this post. For those of you who are not, I seriously recommend checking it out… it’s hilariously funny.

Recently walking around the supermarket with ‘B’ we discovered her favourite ready meal was not as it always is, the packaging had been revamped. I could see her eyes glazing over and in my head I was cursing the supermarket for changing the packaging, how dare they? Didn’t they realise the trouble they had caused? I tried to reassure her that the contents were the same, they had merely changed the packaging. ‘You’d better be right,’ she finally conceded, ‘OK I’ll try it.’ Mmmm… I thought, that was progress, a few years ago the mere hint of a change in the packaging would have caused great confusion followed closely by a Meltdown.

I sighed a huge sigh of relief and she smiled. ‘I’ve just realised,’ she said, ‘I just had a Sheldon moment!’ In a recent episode of The Big Bang Theory, whilst sitting in one of their regular dining places, Sheldon discovers the menu has changed, the order of the foods swapped and some given new names. Not being able to cope with such a drastic change, he makes his friends leave to eat at another regular haunt instead.

They have never actually stated, to my knowledge anyway, that Sheldon has an Autistic Disorder, but we all think it must be so. As a family we have chuckled through many a situation that mirrors ‘B’s quirks, it has helped her alot actually – to lighten up and see the funnier side of the situation. Don’t get me wrong, we take her quirks seriously but sometimes there is such an unwillingness to see it from any other side than her own we get frustrated by her inflexibility. Watching this show has allowed her to view some situations from a different perspective and she can laugh about them.

For instance, Sheldon always has to sit in the same place, his cushion always being exactly as he needs it to be. ‘B’ is like that, she has her spot and doesn’t like anyone else ‘contaminating’ it. She likes routine, Sheldon and his friends sticking to the same day to go to the comic book shop etc. There are so many similarities that a Sheldon Moment is never far away now!

Oh and by the way, the ready meal was not the same… they had changed the recipe too. Didn’t say so on the packaging though! So, we now have to trawl the supermarkets for a replacement, that will have to be as good as the last one!

Till next time,

‘B’s Mum

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

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