Monday, 15 December 2014

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

Tuesday, 4 September 2012

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…


Tuesday, 15 November 2011

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

Saturday, 5 November 2011

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

Sunday, 9 October 2011

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

Saturday, 25 June 2011

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…

Wednesday, 18 May 2011

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…