Summer so far.

Summer so far, aside from being a bit of a wash out, has been interesting!

Hannon, Lily, Harriet and I have made more than a few trips to Houghton House after discovering that it is brilliant for role playing games. The kids have really let loose and played Batman, Avatar and countless other chase games/shooting games/hiding games/mystery games and ghost hunting games. They have played for hours on end in the beautiful surroundings of Central Bedfordshire.

To be honest, I'm a bit worried that the local residents might think we are 'casing the joint' for some big job as we have been there so often, mostly at sunset!

But, wow, to have them voluntarily leaving the house and running around outside regardless of the weather has been magical and it is a nice reminder of why we love the Summer so much.

In other news, Dominik called the police to come to our house. Not so great. No.

He told the dispatch lady that I had 'tried to strangle his face' and that he was being assaulted. Sigh. I am more than willing to confess that yes, I did lunge at him (but that I lunged at him due to tripping over the end of his bed) whilst trying to take away his controller and headset in order to stop him playing a game which was causing him so much anxiety that he could no longer distinguish reality from fiction. Shit.

About half way through the call he realised what he had done and began back-tracking at a remarkable rate, but obviously this was to no avail. The dispatch lady explained to him that she had a duty to send an officer to our house.

Lily went into instant meltdown imaging the worst and fearing that I would be arrested and Dominik was almost suicidal thinking about the potential consequences.

The male officer arrived within ten minutes of Dominik making the call and he was professional, courteous and friendly to us all.

He listened to what we all had to say and took the time to explain to Dominik that what he had actually done was waste police time for what was essentially a fight with his mum over his computer game.

Domink was embarrassed and upset but handled it well overall. I was embarrassed and upset but also grateful at the speedy response and the understanding shown by the officer.

All's well that ends well I guess. I think Dominik would hesitate before doing it again and I do think he learned this lesson. It has always been one of my greatest fears if I'm honest so I'm glad it is out of the way now!

I should add though, that the officer did tell Domink that he should call again if he felt genuinely threatened by anyone (including me).

Ummm, what else? Well, we bought a little tent for our back garden and have had some great fun sleeping out and playing games in it during the rainy days. Hannon has discovered that he can read Harry Potter by himself. Lily has just had her first ever day out without me (or anyone else she is related to) and it went really well overall. She did hide in the toilet on two occasions during the day and she had a massive meltdown once she was home but that is to be expected I think. I'm just so proud of her for wanting to do it and managing to too!

We've already been on our holiday to Scratby as well. That was a beautiful five days away. We did lots of swimming (Lily can now swim on her back) and we went to the beach and Great Yarmouth Pleasure Beach too. It all went by without incident but that is mostly because Dominik did not come with us. He chose to stay at home with my mum and the animals.

He told me that whilst we were away he did not have a single meltdown nor did he lose his temper or swear (my mum agreed) and he made a point of telling me that he should have been an only child. Oops.

Dominik just likes to be left alone and he loves the quiet.

I do feel awful when I hear this from him because I just feel so guilty that we can't do more. I obviously cannot make the house silent at all times and I obviously cannot vanish my other children but I wish I could, just for him. I'd make him a giant soundproof bubble if I could.

Although, he is very lucky I guess because he does get so much down time. He does not have to contend with school, shopping trips, visits to relatives, day trips etc etc if he does not want to and I suppose it must be helping.

This week he and I focussed on his self-esteem. He admitted to me that he does not often like himself and that he is completely unsure of how it feels to be truly, intrinsically happy. We talked about dopamine and what it does and we discussed how his computer creates that hormone for him and therefore ensures his 'happiness'.

Dominik knows that he needs to learn how to be happy in himself and without any external stimulation but he also knows that at this time, it is not possible. He knows that he is at increased risk of becoming a lifelong 'addict' in some way and he is conscious that he does not want this for himself.

He is also aware that he missing out on so much, this year particularly. He has missed countless trips to visit good friends and two short breaks. It makes me as sad as it makes him happy.

Together we can work this out. I know we can. But, like most things, it's just going to take a little time, patience and practice.

N x

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