Tuesday, 24 November 2015

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

Tuesday, 23 June 2015

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

Thursday, 12 March 2015

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...


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...

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?


Till next time
‘B’s Mum

Saturday, 5 November 2011


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