Sunday, 17 May 2015

Ignorance About ASD- There's no Excuse

Now, do forgive me, I'm not entirely clued up on every single condition or syndrome that I hear about, nor am I a qualified geneticist who can explain the intricacies of genomes to you. However, I do have a 'basic' knowledge of the well known syndromes and conditions, and if I hear of something that I have no knowledge about...I will have a little gander on the internet to clue myself up a little.

So, in this day and age, it has absolutely stunned me and saddened me deeply that my social media feeds are filling with devastating stories surrounding individuals with ASD (Autistic Spectrum Disorder).

I am reading about people who have made their way into their positions in life through intellect and achieving high social standing; ridiculing (most recently a British celebrity) and physically assaulting (An American police officer) young people with ASD; not to mention the pilot asking a family to leave a plane.

Now, ASD is an incredibly common diagnosis and I cannot accept that these people haven't heard how a person can be affected.

Maybe they expect that people with autism will quietly rock in a corner, avoiding any social interaction and keep themselves to themselves.

That's very often not the case.

Some people with ASD can struggle in different environments and this shows in their behaviour. Imagine if you walked into a room and somebody was repeatedly scratching their nails up and down a blackboard into a microphone.  Would you be able to sit quietly through that and concentrate of someone talking to you? This a a little example of what some people go through.

There is so much more that I can explain, but that's a different post altogether.

To me, there is so much information not only available to read up on, but also shown through the media, that there is absolutely no excuse for ignorance like this.

Unfortunately, it seems that we will always have to deal with this, these people have no intention, or the interest for that matter to educate themselves. In which case, they can only expect to receive bad press.

For more information on ASD, take a look at The National Autistic Society

Follow me on twitter @katesvie

Monday, 17 November 2014

The Disasterous Beginning (In Education)

I always say the same thing when asked: "Is your little one in a mainstream school?"

I reply: "Yes, we've decided to try the mainstream route first"

Really, that's extremely wrong. It's wrong because, actually, we don't have a choice, so we didn't 'decide' anything! Really, we are forced to put our child through mainstream education until the school feel that they can't offer our child any more.

Unless a child follows the 'special education' path from 'birth' and has a statement (or EHCP as it's now known) in place for the beginning of their educational journey, us parents have no choice other than to plunge our child into the mainstream school and cover our eyes, hoping for the best when we do it.

I must admit that being on the path of review meetings and the mention of a 'EHCP' for a second time is rather a slog. It's very wearing on the mind and body, never mind wearing on the nerves of the child who is under constant scrutiny.

Rascal #1 is now comfortably ensconced in a rather perfect special school, after we 'decided' (ahem) to try mainstream. We were also refused a statement initially (that's when the laptop was hurled across the room), however, after the second attempt, we hit the jackpot. This enabled our first born to attend school in comfort, familiarity, in a stress free environment, with small class sizes and for us as parents to blow out a huge sigh of relief. Suddenly mornings weren't so bad.

However, second born is not so lucky. Rascal #2 has to deal with overstimulation in a class of 32 at the age of 3, while dealing with ASD and potentially a rare genetic condition. #2 runs and runs and runs, endearing themselves to teachers and assistants alike who adore the attention they are getting. Even the installation of a dark den in class doesn't seem to keep #2 from tipping over the edge once home.

Oh yes. Home time. That wonderful moment when #2 and #3 are so hyped up from overstimulation and hypersensory that our house becomes akin to a zoo.

Rascal #1 however, is respectfully chilled out at this point. #1 has had the correct amount of stimulation, with the correct therapies to balance the sensory requirement, while learning in a creative teaching environment.

Unfortunately, the arrival of the younger two doesn't keep #1 calm and suddenly all three are as high as kites.

However, an EHCP is unobtainable currently for our youngest two. Wouldn't you think that if a child has a diagnosis, then surely, support they need would be put in place, no questions asked?

I believe that the majority of mainstream schools are wonderful and do try ultimately hard to include children with additional needs, but the teachers don't have the training of SEN teachers, or the vast knowledge of what a child needs, and indeed the school generally doesn't have all of the facilities that a child with special needs requires.

Why do we have to fight so hard for what we need?

I would offer the following advice:

* Know exactly what you want for your child
* Persist with your requirements
* Always be polite, and respectful, but be very firm.
* Read up about the system and let the school know that you are clued up.
* Offer to help with the gathering of evidence whenever a stumbling block is hit (it will soon work    out!)

Follow me on Twitter @coffeewinechoc

Friday, 12 September 2014

When The Tears Fall...

So many times, when speaking to parents who have recently received news from specialists which knock them sideways a little, the tears will come. I offer sympathy and tea, along with a box of tissues and let them cry it out.

Why oh why is there one comment that is said every single time a parent gets upset?

"I'm sorry" they say as they wipe their tears.

Why? Why are you sorry for feeling low? Why are you sorry for venting your sadness? Don't be!

Think about it; if you're laughing, you know, the type of laugh where you can barely breathe...there's a saying 'crying with laughter' would you apologise for wiping away those tears? No, of course you wouldn't, so why should you apologise when you're sad?

Stop it! You are fully entitled to cry!

I tell parents that I don't even want to hear that! tears are good when you're down, they help get it out of your system. If you prevent tears, it's much harder to pick your chin up. It's a huge venting system that our bodies have set up and it happens for a reason.

So, unless you're going to start apologising for tears when your laughing heartily, don't apologise for tears when you're down!

Follow me @coffeewinechoc

Tuesday, 9 September 2014

How To Challenge The Disapproving Onlookers

We've been there before haven't we? Enjoying a day out and our little one catches some unwanted attention, usually in the form of the 'do good' parents. Yes, those who have never been challenged whilst living on this earth.

This difficulty is particularly troublesome when you are the parent of a child with 'hidden disabilities', by this I mean a child who, at first glance, seems healthy (and in the onlookers opinion simply badly behaved). An example of hidden disabilities would be disorders such as ADHD or ASD.

Recently, on a holiday, my eldest child was victim of a tongue lashing from a disgruntled grandmother, who believed that her young granddaughter had been pushed down a slide by my little rascal.

Granny didn't realise that I was sitting very close by and observed the whole thing- from the lack of pushing (which the very whiney grandchild had complained about) to the tongue lashing with accompanied finger wagging in my child's face. The old lady swiftly guided her princess to her mother and recounted the tale.

I was, at that point, making my way over to my child, knowing exactly how to handle the situation. My child was more upset by the 'in the face' manner of the woman more than the accusation, which, frankly, as my child has communication difficulties, he was unable to process the whole situation, never mind  what the woman was blethering about.

I explained to my child that he was to say sorry to the little girl, in his was, by himself.

We strode over to the three perfect females.

"Excuse me" I began
The old lady turned and glared at me, ready to start a feud.
" my son has something he would like to say."
The woman raised her eyebrows and pursed her lips at him

He signed 'sorry' to the little girl.

The old woman gasped and put her hand to her mouth.

'Oh, no! I'm sorry too!" She looked at me apologetically "I didn't realise" she said and responded by thankyou in makaton to him.
I explained that he had communication difficulties and that he didn't understand what she was saying to him. However I also explained that he does need to apologise when he does wrong. She said she appreciated it and the family beat a hasty retreat.

We were on a holiday complex and after that we didn't see them again.

I now use this as my way of embarrassing those who are to quick to assume, and also to teach people not to judge. I don't think these people will be so quick in future.

Makaton is a fantastic was of communication, even for those with language, I find that if they have a meltdown or zone out, the makaton signs can help them focus, while showing onlookers that your child is not simply badly behaved.

For more information on makaton and location of courses, click here

follow me on twitter @coffeewinechoc

Saturday, 6 September 2014

I'm Back On Track!

Hey all!

I'm picking up here again after a very hectic few months. I hope you've all been keeping your chin up and have made it through the summer holidays!

I know how stressful the summer can be, even having the healthiest of children home from school- their energy seems relentless, but when you have children with additional needs home for a long period of time, it's really hard to keep yourself stress free- it's amazing how much space you get (and need) from those days when they are at school! For those of you who home ed- I take my hat off to you, that's simply amazing!

Something that I would like to implement is a little personal assistance to you all. If you would like me to write a post on a situation that you find difficult, or need help, or simply would like to know how I would handle it, drop me a line by emailing me via the contact form or direct message me on twitter. I will keep it completely anonymous (unless to tell me otherwise). Hopefully this will bring some big issues to the surface and hopefully get some answers and some darn good advice!

Also, please don't hesitate to comment directly in response to the posts (any offensive comments will be deleted and removed immediately, and the poster will be blocked and reported, so it's really not worth it).

So, let's go!

follow me on twitter @coffewinechoc

Saturday, 24 May 2014


Meetings are hard enough as a parent, often feeling that you're not been taken seriously. When I first attended meetings, both medical and school, I felt that I was being told about my child, rather than the professionals listening to my concerns.

I managed to turn this around.

When attending school meetings, I would strongly advise you to invest in a briefcase style bag, and carry a medical file with your child’s latest reports in it (photocopies too if possible to be able to hand out to those who don't have copies). Not only does this make you look more serious, but it also shows that you are organised and are on top of your child’s medical intervention. 

I began to do this, and can now produce a report at the click of a finger. I have found that I have been well respected, listened to, and spoken to in a good manner. I also feel that when I have asked questions, the responses have come thick and fast. It’s better than turning up with a dog-eared notebook and inkless pen, or even worse…nothing. 

Also, dress as well as you can. Unfortunately in some circumstances we still do live in a stereotypical society and people will make assumptions on your appearance. I have learned this, through experience, and felt that I was making excuses for myself, in a rather embarrassed manner. It doesn’t matter that the person who you are speaking to is in a designer outfit, having had a perfect night sleep, shower that morning, full face of makeup, and perfectly manicured nails; compared to you having barely scraped half an hours sleep and you take a sneaky look at your feet, hoping that you hadn’t left your slippers on!

Remember, gain confidence in yourself, nobody knows your child better than you do. Speak loud and clear, tears can't be helped, and don't apologise for them. This is your child and you're fighting as hard as you can! You're fantastic, brave, and a force to be reckoned with!

Follow me on twitter @coffeewinechoc

Wednesday, 21 May 2014

Watch And Learn From Your Children

Learn through your children. This is the biggest piece of advice I can offer. Don’t push them too hard to perform if the ability isn’t there right now. It may come later, let them show you their limits at that time and learn by what they do, say and how they behave.

I believe that we have something to learn everyday from our little ones. They are a new person, with different ways of dealing with this big wide world and sometimes, you need to understand what flicks their switch.

I know some experts suggest persevering with exposure to situations that they find difficult, however, through experience, this can also be incredibly difficult for them and incredibly stressful for you.

For example, if they have difficulty getting onto public transport, it is probably not a wise idea to bustle them onto a crowded bus, with standing room only at a peak time of travelling. I believe in easing into the situation. I have been known to stand at a bus stop for half an hour to use a bus which only had a couple of passengers. If you go ahead into the full on scenario, you can be sure of a meltdown, a huge amount of stress for you and many non-understanding passengers thinking that you are the most useless parent in the history of parenting. You don’t need to do this to yourself. If you feel the need to expose to situations, do ease into it, and increase exposure as and when you feel that you are both ready.

Academically, allow your child to lead his or her own way. If you push your child when they have learning difficulties it can lead to stress for both of you.

Follow me on twitter @coffeewinechoc