The bad and the good.

I have come to believe that after the bad comes the good.

I am not sure whether or not this is actually a philosophical question (a la Augustine) but for us, when there has been a true sh*t storm, there then comes a precious calm.

During this awkward time of  such rampant and blatant persecution in our country (world?) (whether that be because of your religion, race, disability, sexual preference, choice to home educate etc etc etc) big things are happening.

In the last week I have spoken to three different parents who had just/were about to de-register their children from school.

It is almost as if, by way of their blatant persecution and singling out of the alternative education community (NSPCC report, the saddening, recent (but not current) story about the little boy in Wales, the supposed ' hidden' ulterior motive whereby parents mean to 'radicalise' children, Loose Women), the government have in fact created a tidal wave of people having a closer look at this area.

So, for home education, one of my passions, parents are actually considering the question on a massive scale. This is giving the home education community an unprecedented opportunity to discuss their choice rationally, animatedly and perhaps most importantly, logically (because the success of individualised learning is well known and should be the gold standard for every educational establishment, not just home education), In this article from 2010 in the Guardian newspaper, you can see this quite clearly.

So, yes, this full frontal assault has resulted in an amazing opportunity for everyone. Let's talk about it. Properly. Using evidence and experience and whilst feeling confident in our ability to make the best choice for our family. Let's not fight amongst ourselves.

It is really no one else's business how you and I as parents choose to educate our child/ren. We're all doing our best!

The major point to be taken from these kinds of massive, light-shedding events (specifically the home education events in this instance) is that all choices/options are valid. We can't like them all (some are truly horrifying indeed in the broadest sense of these events) but we have to respect peoples rights to make them all.  It sucks at times, but mostly it is what makes us free. Choice, as they say in 'The Matrix', is the problem.

But, I digress, what inspired me to write this post in the first place, is my current experience with my kids.

This past week has been truly horrendous at times, ('throwing in the towel' kind of horrendous) but, that utter madness has been concluded with exactly the opposite degree of madness.

The level of achievement in my house right now!

The communication, the the life skills, positivity, learning ...you name it. I am so energised by the progress occurring in my house that I am hardly needing to sleep! For the first time in my life I am surviving on about 6 hours...and not feeling tired! Something must be fuelling me and I think it is the children.

Harriet is apparently in training to one day climb Mount Everest! She would surely be 'The World's Climbing Champion' ... in the under 12 months category!!! She is so fast, so sure footed and so determined. I simply stand by her and help her learn how to do it safely. It is heart-stoppingly nerve-racking but it is so worth it! She goes easily and confidently up the stairs now. She can get down from a bed. She attempts to climb up into her high chair and will push things around to climb somewhere she wants to go but can't!! She is also loving a set of little stackable eggs with a duckling in the middle. Watching her figure out how to do it is so fun. She also LOVES being read and sung to. 'Dear Zoo' and any song will do.

Lily has suddenly, and I mean over night, gone from not doing any maths to doing additions of three figure numbers, subtractions of three figure numbers and is beginning to understand the idea of 'times tables' and why they are helpful.

As an aside, I feel that school does this the wrong way around. They try to teach the times tables before children learn for themselves why they are good to learn! It is much easier when the child is motivated by their own experience to explain to them a new concept which they now know, will be helpful to them now, and in the future.

Dominik has yet to 'avoid' a single day of his physiotherapy work. He is still doing parkour. He too has suddenly found the relevant patterns in maths (but still won't work with any odd numbers!!!). He is also trying his hand at his first model kit. Loving it, but finding it challenging for his fine motor skills. Excellent! Oh, and he bought a comic with his own money! Unheard of. He is reading again.

(We realised tonight that we all have our own bookshelves..such a lovely moment.)

Hannon has just simply worked like a trojan on his coding. But, alas, I truly have no idea how well he is doing. I know that he is not nine yet, and that he began learning at the end of October after doing two tutorials with me, but is his progress considered 'good'?

Meh, who cares! Hannon is learning so much, so fast, and with so much enthusiasm that I do not think that the kindest measurement of this is one that means he feels he is in competition with anyone aside from himself! If he is happy with what he is learning, that is good enough for me. He is achieving to his highest possible standard. Brilliant.

He is also still attending Cubs after asking to quit in October! He's slightly wary but knows that I will allow him to stop at the end of any month if he wants to. But that has not happened yet!

He is actively enjoying things now. Partly because the pressure if off to stay and partly because the activities have suddenly become slightly more 'challenging' and it turns out, that he is excelling! Now that the number of 'games' that he doesn't know have decreased the tables have turned.

He has, on two occasions, been the only child to successfully complete both the co-ordinates task (he was also, coincidentally, the only child there who had not 'done them already') and the first aid task! He was STUNNED and so bloody proud. He really stands out among his peers when it comes to his ability to learn new skills (what we focus on most I guess...not what to learn, but how to learn) and the speed with which he can acquire them if he wants to.

He's a hidden, understated little gem. I cannot believe the grace with which he is growing up given that he is enveloped by two such demanding, strenuous siblings. He is my inspiration.

They all are. I just feel so privileged to be on this journey with them all.

To end, I have these motifs in my bedroom. Call me sentimental but they really do help.

Don't let anyone dull your sparkle
Be the change you wish to see in the world
She can do it
Life isn't about waiting for the storm to pass, it's about learning to dance in the rain
When it rains look for rainbows, when it's dark, look for stars

I have more than those but they are the only ones I can read from where I am sitting! :-)

My hope is that you feel inspired by this to consider your own challenges and demands in a slightly different way for a moment or two.

Without the bad, I wouldn't have the good.

Sleep well.

N x

PS - I am tired now but I want to publish, so please excuse any typos. :-)

Misunderstanding and Prejudice.

As a mum of extra-ordinary, special needs children, it is increasingly difficult for me to read countless stories on a daily basis about the amount of misunderstanding and prejudice that is out there in the world of 'professionals'

Everyday I am corresponding with mothers (and some fathers) who are at the end of their tether (and sanity in some cases) when it comes to trying to communicate the needs of their children with those who are meant to be helping them.

There is a stunning lack of empathy and understanding amongst professionals when it comes to supporting a child's sensory, emotional and physical needs. This is particularly evident in the educational establishment, not to mention the paediatric setting and don't even get me started on Social Services.

Let me preface my criticism with this thought - of course there are some amazing professionals out there in the country (and world) but unfortunately they are few and far between. Couple this lack of professional understanding with a parents lack of medical vocabulary, and it can get very adversarial very quickly with the parent often being blamed for their child's needs.

The parents I am corresponding with are telling me that those charged with the safety, education and well-being of their children are simply not listening to them.

They are almost unanimous in their cries of, "They think I'm a bad parent." "They say I lack the skills to the manage my child effectively." "They think he/she is just naughty/attention seeking/dramatic/uncooperative." And the list goes on and is exacerbated by a further lack of adequate diagnosis from the paediatric teams. This is particularly true in the case of Pathological Demand Avoidance which is not in the manual and is therefore 'not even a real condition' but simply a parents excuse for poor behaviour. As a side note, not all parts of the country refuse to diagnose PDA making it even harder for parents to figure out where to turn.

Parents often face the above charges without the professional having spent much more than a few hours with their child and even when parents present video evidence, behaviour diaries and testimony from others who care for their child they are still ignored. How can this be?

The professional literature would have us believe that WE are the experts on our children (and of course, we are) and yet in reality, we are ridiculed, belittled and patronised and, more often than not, sent on parenting courses which, in my opinion, is the worst insult of all, especially if you are the parent of more than one child and the others are 'conforming' and 'behaving well' with no obvious difficulties. Surely this alone indicates that it is not the fault of the parent?

My son has Sensory Processing Disorder (a condition commonly diagnosed alongside an ASD) and he often needs deep pressure, movement breaks, quiet time, something to chew or fiddle with and more sensory feedback from his environment (a sensory diet). He can react violently to loud noises, bright lights, too many people and strong smells. As his mum, I know what might cause extreme reactions and I am able to monitor and control his environment when necessary to avoid the sensory overload. I know when he needs his ear-defenders or his chewing gum or even a great big squeeze!

I don't think these adaptations are unreasonable if it allows him to regulate himself and participate in 'normal' activities! They are a necessary part of his 'therapy' and have a huge impact on his behaviour. I think they should be respected, just as you would allow a diabetic to take their insulin, or a wheelchair user to be able to use a lift. Just because they are not visible, it does not mean they are not real.

Now, why can't the professionals accept and meet these needs too? If my son were at school, I would send him armed with a list of strategies and techniques to give to the professionals in order to help them understand and support him. I would give them a very long tip sheet about PDA and how best to get him on board with any given task so that he stands the best chance of being able to comply and enjoy what he is doing. What parent wouldn't?

However, the chances are, my carefully though-out tip sheet and long list of successful strategies would be ignored/forgotten in amongst the mass of other tasks that teachers/TA's have to do in a day.

Fair enough, I guess. They do have a lot to do (and lots of other needs to take into account) but, if they do not utilise our suggestions, surely the resulting punishment of our children is discrimination? They are inevitably punishing our children for their disability! How can this ever be acceptable?

I read about illegal exclusions and draconian punishments DAILY which are a direct result of teachers and TA's being unable to meet the needs of our very special children. I admit, these needs are high, but the professionals have a duty of care, and they accept that duty of care and when they fail to meet the standard of care our children deserve, what are the consequences?

The consequences are disastrous. Not only for the teachers, TA's and other children affected during the school day, but also for the child in question and just as importantly, for the child's family when the school day ends.

When that child goes home they will need to release all that tension, frustration, upset and sensory overload somehow. They will more often than not, explode through the door at home and unleash a storm of fury and pent up anger all over their loved ones.

And here enters another 'professional' who, when told about this set of behaviours, instantly thinks that there must therefore be a problem at home! How ludicrous! How uninformed! How insulting!

No, Mr or Mrs Professional, this does not mean there must be a problem at home. On the contrary in fact, it means that home is where this child feels safe enough to let it all 'hang out'. This is where they can release and be themselves without fear of punishment, ridicule or reprisal for their behaviour.

Home is where all of the unmet needs of the day manifest into behaviours which communicate just how badly that child has been failed by their care-givers during their day.

Parents have to deal with the fall out of a failing system only to be told that their parenting is at fault! That their child's behaviour is a result of their lack of boundaries and training on their part.

Sigh.

It is such a soul destroying situation for these parents. Not only is their child being failed, but now they are being blamed for that failure.

How can we begin to address this issue? 

Well, I think, knowledge, knowledge and more knowledge is the only realistic and long-term answer.

Gathering this knowledge from caring, empathetic professionals (Jude Seaward and Felicity Evans to name two I know of), other parents, adults with special needs (who have long since left behind their school days) and of course, listening to our children, is the best way forward.

Places like The Avenue, and volunteers like Joanne, Elaine and Sarah, who are dedicated to expanding the knowledge of parents and carers, is the future.

It is groups like The Avenue that will make the difference to our children by empowering parents and informing professionals.

It is only when parents are given the confidence and appropriate vocabulary that they will be able to effectively advocate for the rights of their special children.

So, please, please, please, spread the word.

Share your experiences.
Share your knowledge.
Share your thoughts and feelings.
Share with anyone who will listen.

Do not be embarrassed (or shy) about disagreeing with a 'professional'.
Do not be intimidated by their qualifications.
Do not let them claim that they know better than you if what they are saying goes against your instincts and ignores your knowledge of your child.

Trust yourself. Get informed. Ask questions.

Be the best advocate you can be.

N x