When medication costs

No one wants to have to medicate their child. No one wants to medicate their child if they could do something else.  And certainly no one wants to use medication on their child that doesn't work well especially if it's because it's cheap.

Art Neuro?

It's been well over six months since I raised the question with our various health professionals. We know our son Anthony has autism but does he also have Attention Deficit Hyperactivity Disorder (ADHD)? So how come it was only today I came across the term neuro-disability.

Anthony has been diagnosed with autism, or autistic spectrum disorder (ASD), since he was three years old.  This confirmed his difficulties in lots of areas such as language, social interaction and also sensory processing.  Both Anthony and his younger brother are sensory seekers and demonstrate sensory seeking behaviours.  They move their bodies an effort to 'feel' right.  Constant spinning, flapping, and in Anthony's case jumping to settle their sensory system. 

At school Anthony leaves his classroom several times a day for movement breaks and as he has grown I've wondered whether his constant moving and lack of interaction could partly be due to also having ADHD.  Many kids with ASD  have comorbid conditions, one's that are likely to co-occur and having both ASD and ADHD is quite common indeed.  Practically if this meant Anthony should be getting different support to help him function at school then I knew I should seek further advice and a diagnosis if needed.

Our appointment with the Neuro Development team was today and could be described as dull at best.  I spent an hour answering the many questions that I've answered before and Anthony sat, tapping, tutting and eventually ended up on the floor. Despite me trying to involve him the conversation, the consultant hardly ever asked Anthony a question about himself.  Anthony was paying absolutely no attention anyway, yet another pointer to his potential ADHD. 

At the end of the appointment the neuro consultant talked a bit about 'neuro stimulus' and Anthony's obvious hyperactivity and said he'd be in touch again in a few days after talking to Anthony's school.  We started on our one hour journey home and after 15 minutes went back past a grand building called the Royal Hospital for Neuro Disability.  It suddenly occurred to me - have our kids had neuro-disabilities this whole time and I've never realised it? 

I don't know why but it doesn't feel like this is the right term to describe them.  NHS England defines Neurodisability is an umbrella term for conditions associated with impairment involving the nervous system.  The basic element of the nervous system is the nerve cell, or neuron.  There are billions of neurons in the brain and this along with the spinal cord forms the two main structures of the nervous system.

NHS England goes on to say that this includes conditions such as cerebral palsy, autism and epilepsy.  Other organisations seem to list different conditions.  I've not been able to find a definite list, but NHS England would say our son's have neuro-disabilities. I've always described Jane their younger sister as neuro-typical and  I've always been happy to describe my boys as having a disability but it seems weird somehow to say they have a 'brain' disability. Clinically, I guess it's true, their brains function differently. 

Obviously I'm not a neuro expert and I think I'll probably not be able to stop myself investigating this more. Most recently I came across the term neurodiversity from Steve Silberman's book 'Neurotribes'. Neurodiversity is an approach to learning and disability that suggests that diverse neurological conditions appear as a result of normal variations in the human genome and presents the idea that neurological differences should be recognised and respected as a social category on a par with gender, ethnicity and sexual orientation. Perhaps it is because I heard the term neurodiversity first that I find neuro-disability strange.  

Whether officially my boys are neuro-disabled or neuro-diverse, I guess all that matters is that my son's get the support they need.  That they are given the opportunity to reach their full potential and to lead their lives in the way they wish.  And so I'll wait to hear from the neuro development team as to whether Anthony needs an ADHD diagnosis and what we can do to continue to support him.  

Links
Our Blog - Hyper what else? (Co-morbid conditions)

External Links
NAS - Sensory
Neurotribes - Steve Silberman's website

Our mummification mishaps - autism and dressing up at school

Anthony's school topic of this term has been the Ancient Egyptians. Anthony's class have been busy writing about pyramids, discussing Pharaohs and making paper mâché mummies. The highlight was a dress as an Egyptian day and workshop yesterday. Or at least, I think it was.

Anthony is seven years old so has got used to the idea of going to school sometimes in either his 'normal clothes' or something else. As a child with autism we initially took a lot of time to prepare him for a change in his routine like coming to school in different clothes. Now we can give Anthony a days notice that it's a 'special' day at school when he can wear 'normal clothes' or a costume. Anymore than a days notice and Anthony can end up focussed on this change to his routine instead of the activities of the day.  It's probably a bit like the distraction that can be caused by knowing you have a test coming up. 

We used to ask Anthony what he'd like to dress up as.  We've come to realise that this often adds pressure to the day. Anthony finds making decisions very difficult so we'll make suggestions. This relieves some of the pressure and unpredictability in the outcome for him.  More often than not Anthony would be glad of the suggestion and this is what I had expected for Ancient Egyptian day.

During the explanation of Egyptian Day on the way home from school the night before, Anthony suddenly declared he'd like to go as mummy. I was delighted that he had expressed an opinion. However, it meant I'd have a come up with a mummy costume. Usually we'd try out Anthony's costume to give him time to adjust and know what to expect. So, I got out clothes I thought I could adapt and showed them to Anthony and let him know I'd add bandages to them for the morning. I spent a good chunk of the night sewing white ribbons onto clothes. 

In the morning everything went as normal until it was time for Anthony to get dressed. His face dropped, he looked hot and his eyes became all glazed. "There aren't enough bandages on the trousers mum," he said. 

The morning routine is fairly regimented. The routine is consistent and avoids down time distractions so there isn't a lot of time for things like fixing fancy dress costumes. As I looked at Anthony I could see the panic on his face. His costume was not what he expected. It's not the same as Jane being disappointed that her snack is a banana instead of an apple like she'd wanted.  It's a completely different level. It's like a fear of things not being right. Sometimes we can help Anthony deal with this fear but looking at him I could tell this wasn't the best course of action. As part of his routine, Anthony gets dressed before breakfast so has to have his breakfast fully clothed on school days.  Given this, I told Anthony I'd fix his trousers after he'd eaten. As Anthony made his way to the breakfast table he calmed down "Thanks mum, 10 bandages would be enough."

Time was of the essence.  Obviously I'd run out if white ribbon, and the actual bandages from the medicine box were useless. As I began just trawling through washing for a clue I remembered we'd recently torn up an old white work shirt for cleaning cloths. Three safety pins later and Anthony was back on course again.  He was very excited and extremely bouncy.  It would have been easy to assume that this indicated he was all set for the day but I know different.  His excitement and bounciness could indeed be part joy at the fun that was lined up for the day.  However, I suspect he was also coping with the nerves and anxiety at the differences it would mean. 

We are really delighted that Anthony can take part in these activities at school.  Every time he copes with something new or a change to his routine is a chance for him to develop and use strategies to cope with it.  This type of skill could really help him when he gets older and allow him to be independent. Anthony seemed thrilled after school. He wanted to keep his costume on all evening and we had to get changed back into it even after his swimming lesson.

As for decision making, we are still working on that.  We have an appointment next week with some professionals to help Anthony with strategies to make decisions himself.  Despite his apparent keenness on his mummy costume, Anthony collapsed this morning because he changed his mind saying he wished he gone into school as a Pharaoh and not a mummy.  As he was still coping with yesterday, it's just as well we have that regimented morning routine to keep him focused.

Links
Our Blog - Disastrous at decision-making

External Links
NAS - Routines and  change

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Disastrous at decision making

A report released today by the Kings Fund reports that mental health patients are at risk due to budget cuts. I've been listening to Radio 5 Live about it. It occurs to me that many people may not know that quite a few mental health conditions are comorbid with autism - that is that they are common occurring conditions.