Almost there....

Wow, over a year since I last posted my thoughts, and things have changed somewhat.

My boy is becoming a man and making his mark on the world already. Whilst he is still challenged by his behaviour, he is learning to control himself when it really matters. There have been no negative events at school for nearly a year now and his last report was glowing. His grades are really good and he has become one of the most well behaved students in his year group. The Pastoral Manager at his school has nothing but praise for him, commenting that his tolerance level is way above his peers. He is taking accelerated maths, for which he needs to do extra work. I asked him if he wanted to do it and he insisted that he HAD TO. "Why?" I asked. "Because" he said "if I'm going to be a prototype engineer, I need a really good maths qualification".

In an effort to help him learn self control and spatial awareness, I bought him a midi kit (drum kit) and he has weekly lessons. Nine months in and he is taking his first drum exam next week. His drum tutor expects him to pass without any problems. Playing drums is a double edged sword - it helps to release some pent up energy and teaches him control at the same time. I would recommend it for children like George.

We still have the white noise - his whole catalogue of different noises is replayed daily at home and is more or less a way of life. As I write, he's making the bottle emptying noise but, do you know something? It's not hurting anybody. It's just a noise. :-)

My extended family have been a boon to me, particularly since I have been unwell. I am very lucky and their support has meant the world to me. They have helped me to believe in myself and my child. Any mother of an ADHD child will understand the sorrow we feel when our special needs children unknowingly affect our self confidence as parents. Our initial reaction to the diagnosis is self-recrimination and remorse... sort of "what did I do wrong?" I have stopped blaming myself. George not only enriches our lives with his humour, his talent and incredible knowledge, he has become a focal point of our family and we all work together to help him build on his strengths. This gives him the encouragement he needs to focus, control himself and achieve amazing things. I now consider myself blessed to have such an incredible child who makes me laugh, amazes me with his level of intelligence and has shown himself to be capable of achieving so much.

We recently had a check-up, at my request, with his specialist. The meeting resulted in praise for George at how well he is doing without medication. We were offered medication, if we felt that George needed it but I will NEVER allow him to take any kind of ADHD medication again. When the results of the long term effects of Ritalin were made known, I wanted to crawl away and die. The first six months he was on Ritalin were brilliant, but after that, the side effects became too high a price to pay. Children should not be prescribed ritalin for more than six months. That's a fact.

George has a couple of very good "mates" from school and he regularly gets invited to their houses - I lost count of how many times I thought that he would always be shunned because of his odd behaviour. I am so pleased that he has been accepted. He will always have "special needs" (God, I had that phrase!), but all he ever wanted was to be accepted for who he is. I believe that time has arrived. :-)

He is focussed on his goal and striving to achieve it.

At 14, George has challenged the world and won. I am very proud of him.

Playing with a group of children

is not something that George has been able to do. Hence his list, earlier in the year, of "everybody who hates me". I have always had great sympathy for his situation. His inappropriate behaviour has isolated him from his peers because he's "not normal" and they don't know how to cope with him.

It scares them...

His inability to behave like them has partly been the cause of his frustration and suicidal thoughts. He has, in the past, even tried to bribe children so that they would be "his friend".

A few weeks ago, George informed me that he would be playing football after school. I was intrigued by this, because in Juniors he joined the after school football team and when I observed him playing he always seemed to be running around like a lunatic... chasing the ball and trying to be everywhere at once. His coach explained how George just didn't "get" the rules of football. A penalty was given to the opposing side, and when the coach asked who would like to take it, George immediately put his hand up....

The change I saw in him, when I arrived early to collect him from football practice recently was amazing. He kept his position instead of trying to chase the ball down, and seemed to be accepted by his team mates. The following week, I observed the same situation. He wasn't the "nutty professor" flailing his arms and legs as he ran - he seemed more controlled and focussed.

Last week, I received a letter informing me of another detention that George had managed to pick up. My initial reaction was one of disappointment. However, when I called the school to find out the details, I ended up grinning.

No.... I haven't gone insane..... the detention was imposed on a dozen or so children for playing in a "no go area". George was playing with a group of children. He was doing what normal children do..... this is yet another indication that he is moving in the right direction.

This week, I had another meeting with the SeNCo. Apart from the detention, there was really nothing to report, so I think I can honestly say that June has been a good month. George is lucky in that Mr W really likes him... he can see past all the bravado and he thinks George is a brilliant young man. As we were talking about event logs, his lips were twitching (which means he is trying not to laugh). I pushed him for an explanation:

Mr W takes George for one science lesson per week. George is allowed into the classroom before the other students, to allow him a couple of minutes to gather his thoughts and settle down. Mr W related the story:

"George rushed in, muttering "there's no way I'm getting into trouble for that!". He sat down and made a visible effort to calm himself down. I peeked round the corner of the doorway, to see a number of students in line. They had their school blazers on, but the breast pockets had been ripped down and were hanging loose. They had obviously thought that this was a good game. George had decided that this was not a good thing to do and had removed himself from the situation before he could be tempted to follow suit"

Six months ago, George would have allowed himself to become involved in this activity, in an effort to ingratiate himself into the group. He did something that ADHD children do not normally do.... he thought about the consequences....

These are very small steps, but each step is significant and reinforces our belief that The Dore Programme is working.

I often look back at previous posts, so that I can try and measure our progress. George hasn't had a rage for about four months now - he used to have at least two a month. George used to blame all of his problems on his ADHD. His answer to every thing was "I can't help it, I have ADHD". He hasn't used this excuse for months. He believes that he is getting better, and this self-belief is, again, something that ADHD children do not normally have.

I don't want anybody who reads this to think that The Dore Programme is an overnight miracle - it isn't. We have recently experienced a slight backward step inasmuch as George has started making some of the "noises" again. This evening he went to feed his rabbits, and screeched all the way there......

When I met up recently with another "Dore" Mum, I mentioned this. Her child has been on the programme for much longer than George and she explained that this is perfectly normal. I have it in my mind, now, that he will probably take two steps forward, followed by one step back.... then two steps forward and one step back.....

That's OK with me. I can understand the logic behind it, and am quite happy to persevere. George, also, is happy to persevere. He seems to instinctively know that these "silly little exercises" are helping him.

There's been some good news regarding The Dore Programme recently. They have one centre open, in Kenilworth, and are working their way through clients, in date order, and inviting them for assessment. I think that's going to be about three and a half hours for us, in the car, but I'm looking forward to getting a new appointment.

Look hard enough, and you'll be able to find some comments which "rubbish" the programme. You don't have to look very hard to find lots of articles about how good it is. Dore could have abandoned all of us, when the company when into administration. They had no legal obligation to try and continue to provide any kind of service. Not only have they worked hard to support us, they have started to provide a continuance of the programme... at no extra cost to us.

That deserves a thumbs up, in my mind.

To all the other Dore Parents, I wish you continued success and offer my thanks for the continued support you have so freely offered.

We're not alone

Online forums are often a good way of reaching out to people in similar situations, but you can't beat the human touch! With the collapse of The Dore Programme it's been a bit difficult to try and keep some enthusiasm going because we were suddenly thrown back into the "unknown". In the past few weeks, I have met a couple of "Dore" mums, and it was a huge boost. We swapped stories and I know the moral support I received was invaluable. I sincerely hope that the other Mums felt the same way.

One of the main things that we seemed to have in common (apart from the obvious) is our feeling of being let down, not only by the educational system, but also by the NHS. One Mum has felt so let down by our education system, that she pays for her child to go to a private school in an effort to get him some kind of support for his dyslexia. The Governments statement of "every child matters" is laughable. Saying and doing are two entirely different things, and from where I'm sitting, the Government aren't doing very much....

Is it any wonder that we turn to alternative therapies? Over and over again, I see parents commenting on how little help and support they get and all too often I see the same theme emerging...

It's not just in the UK. One of the Mums I met doesn't even live in this country and the stories she told me, of how she struggles to achieve some level of understanding and support nearly made me cry.

I'm not going to go into specifics because I don't have the right to comment on other peoples lives without their permission. Suffice to say that, at the moment, I feel there's an awful lot of talking and very little action.

I know very little about Dyslexia, which is where The Dore Programme has it's roots, but George has a friend who is Dyslexic and his mother has very little (nil) support. Is Dyslexia so prevalent that we just accept it as a disability, shrug our shoulders and move on?

This site has a huge amount of information, not just for Dyslexia, but for other learning disorders, including but not limited to ADHD and Autism. I was interested to read a recent post there, about ADHD and fMRI scans which show that the cerebellum in ADHD children is underdeveloped. I'm frustrated just now, because I read a published paper giving more information, meant to bookmark it, forgot, and now I can't find my way back to it. But, when I stumbled across it, I had a "eureka" moment. It basically said that of all the children who had the fMRI scan had one 'physical' thing in common - a specific section of the cerebellum was smaller than in "normal" children. None of these children had received medication. There have been questions in the past as to whether the smaller (part of the) cerebellum was due to Ritalin or ADHD. This research confirmed that Ritalin seemed to play no part in this under-development.

This was a huge relief for me. Having a child who has been medicated for five years, and given recent developments into the efficacy of Ritalin, I have castigated myself weekly for allowing him to take this drug, knowing that the long term effects were not fully known.

Anyway, back to these new friends.... I was struck also by many common factors, we seem to find ourselves with remarkable children, they excel in particular areas - to the point that they are so far ahead of their peers, they are out of sight.

The Mum of the dyslexic child related to me how clever her child is with mechanics, how he can do many things that other children of his age cannot do, but he struggles to read and write. She told me how he could hold a conversation with adults, at their level, and be perfectly at ease.... Her pride in her childs achievements was immense, and rightly so. She has taken every step possible to help him but it's been tough (and still is). It's not right that she should have to fight so hard for something that should be freely available to her son. I haven't even met her son, and already I think he's amazing..... !!

The (non-UK) Mum of an ADHD child, is still battling to get the kind of support that she feels is acceptable - she doesn't want medication. The lad doesn't want the medication either. I don't understand why they should be left with so few choices..... it's just not fair. She told me about her "mothers instinct" and I could relate 100% to it. All these people who tell us that they know best, well.... they don't. We are the mothers - we know what is right for our children, and we should be allowed to make informed choices and be given the support to follow our instincts.

As mentioned in previous posts, I also have "invisible friends" - people who I have come across in discussion forums. One of these people mentioned some time ago about the problems her family faced with a child who has been loosely diagnosed as being "on the autistic spectrum". The following words are hers, and she has given me permission to post her story here. She hopes that by sharing the information it may be of benefit to other parents or children in a similar situation. I have changed the names to protect the innocent.

Brief History of Angel - Aged 5 years, 6 months.

Born the eldest of small birthweight twins, she was actually the first to sit up, crawl, say the first words of Mama, Dada, Baba; stand and start to walk. Had the normal injections (not the MMR), but after the last ones, developed a very bad ear infection which resulted in a virus, producing a rash all over her body and extremely high temperature. About 2 months later, I noticed that she was not producing words any more, just babbling, and was no longer trying to walk or even attempt to stand. As time went on, I noticed that she was hand-flapping and making repetitive noises. When she finally started to walk, she was toe-walking. She started self harming, a terrible thing to behold in one so young! She would literally gouge ruts in her arms and legs, scratch her stomach and even bite herself. We now know that this was all through sheer frustration.

What made her "funnyosities" (as her twin sister termed them) all the more marked, was having her twin sister to compare to. The differences between them were so vast, and still are.

Being a Special Needs Teacher of 16+ students, I began to recognise many of her symptoms.

We could almost set the clocks by her repetitive play and indeed her rigid, self-imposed routines. Video's were brought down from the shelf at the same time each day, all lined up in a certain order (woe betide anyone moving them around or even catching one with a foot and moving it slightly out of line!). I began to be able to predict exactly what game she would play next. Sadly, there was never any play with her sister, not even alongside of her. Playtime had to be a solitary affair, by her orders. We lost the beautiful direct gaze into the camera from her shining blue eyes. Instead, she would look at either ceiling or floor. On the very odd occasion, if she did happen to look into the camera lens at just the right moment, it was like looking into two empty little holes. Her very soul seemed to have disappeared.

Without speech, communication became a very frustrated affair, usually ending up in tears and angry rages. She knew what she wanted, but could not make us understand and so the temper tantrums began. Between the rages and tantrums, she began to become more and more withdrawn into herself. No cuddles, at least not without a fight first! Very few smiles; just a look of pure apprehension and dejection on her little face. Almost as if she was trying to say to us, "Why can't you understand me?"

I managed to get her assessed through the Pre-School Unit at a local school. Thankfully, she was referred and sort of diagnosed. She is a bit of an enigma, as she does not slot nicely into any little boxes. They cannot say she has Aspergers because........., they cannot say to what level she is Autistic because..........

We do know that she is very clever, has a brilliant, almost photographic memory, and a wicked sense of humour. For now, she has just been diagnosed as being on the Autistic Spectrum, but is awaiting further tests. She has a full-time Carer in school, as she does not have a sense of danger. She does not seem to have pain receptors, so does not really understand pain, but throws a real wobbly if she sees blood! When she screams, it reminds me of one of those sirens they used to sound in the war to warn of an air raid.

Thanks to the Pre-School Unit which she attended 3 days per week, she now has speech, albeit not to the same standard as her peer group, but she has also taught herself Makaton (after seeing it used with other children in the Unit!). This helps greatly in reducing the rages due to poor communication skills. However, as she gets older and stronger, her rages become more and more violent. She had recently started to attack her Carer and a few children in School. As she is still not toilet trained and has to wear pull-up Trainer Nappies, some of the other children have started to notice and began teasing her. At least we know that she will never put up with being bullied, but we do sometimes worry that she may become the Bully instead.

We have tried many things in the past year in order to deal with her Behaviour problems and the increasing temper rages. Nothing really seemed to help. Until I met Mary that is! I read her blog, I exchanged emails with her and started to learn about other strategies. The one thing we have always tried to keep Angel off is fizzy drinks and artificial additives in food.

Mary told me about Aspartame being in Low sugar or No Sugar drinks, and the effects that Aspartame seemed to have. We have always given the children Low or No Sugar Drinks, believing we were doing the right thing in looking after their teeth, but now, I have banned anything containing Aspartame, and this seems to be the main help in her diet.

I also found out about fresh Salmon being a good source of Omega3., so she has fresh, steamed Salmon fillets twice a week, to supplement her Omega3 capsules.

Another fantastic bit of information was the Dore Programme. Unfortunately, we do not have the resources to be able to enrol her for one of these Courses, but I am trying to follow the few simple exercises to help with co-ordination. I have noticed that she has now almost stopped the toe-walking.

We started to try to follow some of the dietary advice in the hope of some small improvement.

I cannot say Thank You enough to the Lady who told me about these things! In just a few months, Angel's behaviour has improved tremendously. There have been no attacks on her Carer for at least 4 weeks running now, nor has she attacked any children in school. Her arms and legs (and those of her poor, long suffering Twin sister) are clear of bite marks and bruises for the first time in years! We are now able to reason with her and talk her down from her rages before they hit a peak. Don't misunderstand me, there has been no overnight "miracle". She still has rages and tantrums, she still gets very frustrated at times. But those times seem to be getting fewer in number, and when she does have a rage, it seems only to last for minutes now, rather than the hours that used to be spent trying to hold her tight in order to stop her hurting herself and others.

Our major achievement was last weekend. We went to a family Wedding. We had a short struggle when she was a little overwhelmed by all the people milling around her (we have never dared to take her to such an occasion before, for fear of her having one of her strops), we had a few tears, but they were not from rage or frustration, they were actual sobs of fear. Once we managed to reassure her, she sat down to her 3 course meal, ate with beautiful manners and was actually one of the best behaved children in the whole room! We were so proud of her.

Tonight she has astounded me again! She has just read through her School reading book, without faltering once. What is so fantastic about that??? The book was in Welsh, we are not Welsh speaking at home. She then read it a second time, but translated it into English for us.

She will go far, eventually. With love, care and lots of support. So many other children could also be helped in the same way. I hope our story will encourage others to at least give these methods a try. We were almost at our wits end and about to resort to Drugs to try to calm our sweet little girl down. I am just so glad that I found this information, or rather, the Lady who was willing to share this information, first!

After reading this, I must admit to being reduced to tears. It's yet another example of how "the system" has failed and parents have had to work hard to research and experiment.

It's also a good example of how anecdotal evidence (in my opinion) is worth taking notice of. I'm sure there are many children who seem to cope quite well with additives. But do they? Do they really? Or do they just build their own coping mechanisms? Who knows?

I often wonder if part of the reason we see so much violence in our young people is partly due to this chemical (there's absolutely nothing natural about Aspartame). Recently we've heard about the alarming increase in "girl gangs" and how they seem to be more aggressive. I wonder how many of these girls drink diet coke? - girls need to stay slim, don't you know! I wonder how many of these girls chew sugar free gum? I wonder what would happen if Aspartame was taken off the market and we went back to good old fashioned SUGAR, or even better, fresh fruit juice or just plain water....

It's food for thought, I think......

He does seem to be getting better....

... is what I was told today, by the School SeNCo. We managed to grab an hour after school for a meeting to look at the progress (if any) that George has made recently.

There are still issues with inattentiveness and impulsivity, but generally Georges' progress is described as very good. It's difficult to quantify because we have no real starting point from which to measure him. We do, however, have the "event logs" and this is where we can draw some conclusions from.

As previously mentioned, January was pretty awful, as was February (I found out today) and March was particularly hair curling.... All three months showed numerous negative event logs and each month seemed to be worse than the month before.

Mr W told me today, that 'they' would normally expect to move on from there to discussions about different schooling options - we have a couple of schools in our area for children with challenging behaviour (which I refer to as schools for "naughty children" and have often threatened George with this).

George has completely thrown them, by turning everything on it's head. April was better, May was better still and so far (fingers crossed) there is only one event log for June and that is a massive positive given by a Teacher who doesn't take any prisoners - so coming from her it's real Kudos! :o)

We talked about the possible reasons behind this new attitude that George has. Because there is no science behind it, we have to make certain assumptions. Mr W is a very experienced teacher and can quote chapter and verse on children with ADHD. He has a very good understanding of the problems associated with these children and how best to deal with them. He couldn't understand how George could improve so much in such a short space of time.

We talked about the possibility of his "wake up call" in March, when he was in quite serious trouble on at least two occasions. We also agreed that whilst it may have had some impact, it cannot be the only reason for this massive improvement (ADHD children don't seem to be able to recall how their behaviour negatively impacted on anybody else or themselves).

We talked about the possibility of natural maturation, but discounted that because of the huge gains made in such a comparatively small length of time.

The only other thing we could pin it on is The Dore Programme.

So..... we talked about that for a while. Mr W hadn't heard of it before I mentioned it a couple of months ago. He has asked around and found only limited information, so, because people weren't jumping up and down about it, I think he rather discounted it.

He asked me why, if it's so good, isn't the Government introducing it into school?

I gave him the simple answer - lack of clinical research.

Unfortunately, I then got on my high horse....

If Dore had spent several million pounds (and numerous years) on clinical research, we probably wouldn't have access to this programme, even now. It would still be in the research phase, surely? I don't know.... I'm not a research expert..... but I think that most of these alternative forms of therapy are, in the main, belittled by mainstream doctors and specialists. As a society, I think many of us are very critical of anything which is outside the norm and is termed "alternative".

Ritalin, on the other hand, is well known, has been used for at least 40 years, and has clinical research behind it to prove that it works. Until recently, what it didn't have, was research into the long term efficacy, along with any long term side effects.

Last November, in the UK, there was a Panorama programme about a boy called Craig, who had been taking Ritalin for his chronic ADHD. This was a follow up programme to a previous "snapshot" of Craig, which was taken in 2000.

The 2007 programme was filmed specifically because there were new results announced regarding Ritalin and it's long term benefits.

The results, in a nutshell, are that there are NO long term benefits to taking Ritalin, and the quote made by Professor William Pelham, a world authority on ADHD is most worrying:

"I think that we exaggerated the beneficial impact of medication in the first study. We had thought that children medicated longer would have better outcomes. That didn't happen to be the case. There's no indication that medication's better than nothing in the long run."

If I were able to choose, right now, between Ritalin and nothing, based on that comment, and what I have seen my child go through whilst taking this drug, I would choose nothing. What mother wouldn't?

Why is this information not being plastered all over the newspapers?

We're living in a "quick fix" society, that's why (in my opinion).

Once I had dismounted from my high horse, we continued our discussion and I discovered this:

It would seem that there are an increasing number of General Practitioners (in our area) who are now refusing to regularly write prescriptions for Ritalin. Why is this? Could it be that there is now a huge question mark over what was once perceived as the correct treatment for ADHD?

Why is it, when the proof is there in black and white, that parents are being told that Ritalin is the only way forward for these children?

Why is it, that our children have been prescribed this potentially mind-altering drug when the research into the long term effects has been (up until recently) severely lacking?

Why is it OK to accept this lack of research regarding Ritalin, but our clinicians will not accept the lack of research when The Dore Programme is presented as a very good possible alternative.

Go back a few paragraphs:

There's no indication that medication's better than nothing in the long run.

Is what the Professor said, and he's a world renowned authority on ADHD.

OK... I'll take that NOTHING and raise it with The Dore Programme

I win the game, I believe.

Tell me what's happening...

.. has been the subject of recent telephone calls to School. Today, the SeNCo called me (in half term week....) to give me some feedback and to tell me what his plans are regarding my Son and his schooling. The school have quite a high-tec (to me anyway) approach to recording anything out of the norm. These are called "event logs" and can be positive or negative. I have been trying to get somebody to talk to me about the event logs so that I can see if the changes that have been so evident at home, have been replicated at school.

Six months ago, I always expected George to be late home from school on Wednesdays. This was because his last period was Science and he always seemed to get himself into trouble either just before, during or at the end of this lesson, and the Science teacher would hold him back for a short discussion about his behaviour. I have been told today that she now regards him as one of the most trustworthy students in this group. It seems that when she is dealing with some of the more difficult children, she can now rely on George to sit, behave, and continue with his work.

This is, for me, further evidence that we have made the right decision to follow our chosen path.

Last week, I spoke to his History teacher. She tells me that he seems to be calmer.....
Last week, I spoke to his Tutor. She tells me that he seems to be calmer...

Can anybody see a pattern emerging here?

The event logs:

In January there were at least a dozen event logs - all of them were negative.

In May there were four event logs - one of them was positive, three were negative and they were: He upset another student, by putting the childs schoolbag in the bin. He sent an inappropriate email. He said a swear word.

The SeNCo and I both agree that the negative event logs in May are nothing to be overly concerned about, because they are normal "schoolboy pranks".

Oh wow! What a difference!

English is still a problem, and we have decided that George will have one English lesson a week, out of the classroom, with 1-1 supervision. This will enable him to catch up with the rest of the class and hopefully will also stop the routine that he seems to have got himself into - not paying attention and messing about. We're going to try this for three weeks and then evaluate the situation.

We also have some appointments arranged, so that I can get regular feedback. Finally, I feel more in control.

There's just one small problem. Well... it's not small really..... it's a biggie! Dore have closed all their UK centres, and I'm panicking a little about completing the programme.

As always, the other Dore Mums have been incredibly supportive, and I feel a little guilty that I'm not able to offer the same level of support to them.

George has seemed to regress slightly in the last week or so - he has started making some of "the noises" again. However, this could be normal as I've read that children can go backwards for no apparent reason. My main concern is that George is picking up on my apprehension regarding The Dore Programme and this is resulting in his current behaviour.

Whilst I understand fully that there must be lots of things going on in the background, which we know nothing about, Dore (in my opinion) have been a little slow in coming forward with information for everybody who is currently in the middle of the programme. The announcement was made on Friday and we have spent a nail biting long weekend, waiting for information. Yesterday, a new part of the website went up, which I am told will enable me to access further exercises for George. At the time of writing, it doesn't recognise my PID, and so I have no access to it. I understand that it must be taking time to load up all of the records, but, until I see it with my own eyes, I still feel as though we are in limbo. I am happy to continue the programme, using online resources and the help and support of the other Dore Mums, although, clearly I would be happier if we still had our regular assessments but we don't know if that will ever be possible.

We are just playing a waiting game at the moment and it's hard to stay positive when everything is so uncertain.

We have enough exercises to last a few more weeks, and we're continuing with those. I'm hopeful that by the time we really need them, we will be able to get more so that we can continue to encourage our Son to develop into the person we know he can be.

It would be heartbreaking for us (and for lots of other parents) to have seen such improvements, only to have it all crumble to dust...

In the event that we can eventually access the exercises on the Dore website, I have decided that we will need to explain to George why he isn't going to the Dore centre for testing. He'll ask, eventually!

I'm going to tell him that he's doing so well, that they don't need to see him for the time being. :o)

You want to what?.....

Yesterday, we went for a checkup with the ADHD specialist. We go every 6 months because children who take a class A drug need to have regular medical checks to make sure they are growing at a normal rate (Ritalin has been known to stunt growth). George also has his blood pressure taken. What normally follows that, is a short discussion regarding any issues or problems - this is generally a kind of "counselling" session.

Last time we went, in November 2007, we were told that we would be called back in three months because we had taken George off his meds. Sure enough, 6 months later....... *rolls eyes*

We haven't seen the same Doctor twice in the five years that George has been visiting. Yesterday was no exception. We made that comment and the Doctor apologised profusely and went on to explain about staff shortages and how he, as a consultant Psychiatrist, had been called in to help out. Whilst I am fully aware of the shortcomings of the NHS in terms of resources, it shouldn't be my problem. I'm not really interested in the problems faced by the NHS, I am more interested in the problems faced by my son, and ensuring that he gets the correct support.

I felt a bit sorry for the chap, to be honest. We told him exactly how we felt - that we had been abandoned by the system and left to our own devices. How, in January and February, we were at our wits end and the only support we could get was a telephone call from a hard pressed ADHD nurse, three days to a week after we called asking for help!

In fairness to him, he had read all the notes, and he asked if George was taking any medication at all. This obviously led on to a conversation about The Dore Programme. I was surprised to know that he had heard of it, and he told me that he was attending a Psychiatrists convention shortly, and Dore was on the agenda. He has also seen one other child in our area who is on The Dore Programme and this other child is also making some good progress.

We discussed the cost involved. I'm not a Rocket Scientist, but even I can see that Dore could actually save the NHS money, if only they would get behind it. I have no idea how much Ritalin costs, but 18000mg per year for five years must cost more than a few pence..... add to that the cost of the resources - psychiatrists, support staff, ADHD nurses etc., and the five years that George has spent within the system must have cost more than £2500. Had we not discovered Dore, George would be faced with at least two visits per year for .... I don't know how many more years. Again a cost factor when comparing traditional ADHD management with The Dore Programme.

We also discussed the "leap of faith" factor. Yes, I know that Dore doesn't work for everybody, and I'm sure if the people at Dore could identify why it doesn't work for all then they could possibly take some steps to refine the programme. Perhaps in the future this may come to pass.

Whilst we were talking, George (bless him) was sat quietly next to me. He was sketching a hot rod and I noticed how calm he was, how relaxed, how totally focussed he was on what he was doing. This is not something he has ever managed to do successfully when there is something else going on in the same room. The Doctors words "He's like a different boy" will stick in my mind for some time to come..... and as I'm typing these words, I'm grinning like an idiot....!

He is like a different boy, he's calmer, quieter, more content and we have noticed this, but it's doubly impressive when other people notice. The Doctor admitted that he was apprehensive about our meeting and had been racking his brains to find a way to help us. I know that once he met George, and saw the way he behaved so perfectly, he was quite relieved.

To answer the question "You want to what?"....

He wanted to discharge George. He doesn't feel that George needs to go back for any more check ups and is very happy with his progress.

Now... the cynic in me feels that by discharging George, much needed resources will be freed up to deal with the many other children within the system and also on the waiting list. Whilst I am sympathetic, and God knows I realise how frustrating it is to be on a waiting list where you never seem to get to the top, my main concern is my child and his wellbeing. For this reason, I refused to allow him to be discharged. We are very happy with the way George is improving, and I have faith in The Dore Programme. But, we're still only 3 months into it and I want to retain a safety net for 6 months just in case.....

So, we'll get another appointment through in 6 months time, and I'm hopeful that I'll be able to take my perfectly normal son to see them, and sit there with a smug look on my face....

Hot and Sweaty...

was how we arrived for our 2nd follow up visit on Tuesday. It was a beautiful day but it was a bit hot in the car for a two hour motorway drive, even with the air conditioning going full chat. The Dore centre, just outside Taunton, is in a converted barn attached to a working farm. George had a run around in the field to burn off a little excess energy, before we went in. As always, we were attended to almost immediately. George was assessed on the balance machine and eye tracking and the results showed that he is making progress (as we had already noticed). His "balance" is still very poor but has improved on both follow up visits. By the time he had finished the assessments he was getting a bit restless and started playing up a bit, but a few stern words outside soon brought him back into line and the rest of the visit went well. He has been given some slightly harder exercises which are more focussed on the balance aspect. Hopefully this will help him improve further.

I spend quite a lot of time working on my PC and over the years have been lucky enough to have a few cyber buddies (people whom I like, but have never met). One of these lovely people asked me last week to explain "the exercises" because she couldn't work out what it was all about. So, for Pat, here are a couple of examples:

Walk five paces forwards, then five paces backwards. Bend to the left three times, then bend to the right three times. Repeat this sequence eight times more.

Using the ball (which looks like a space hopper without the ears), sit down on it with your knees together and your feet together on the floor. Bounce up and down for 1 minute. Then, sit perfectly still on the ball for 1 minute. Close your eyes and bounce up and down for 1 minute. Keeping your eyes closed, sit still for 1 minute.

I also have "real life" friends and am priviledged to have known one of these friends for 30 years. We were chatting a couple of days ago and I was telling her that George needed to eat Salmon twice a week to ensure that he keeps his omega 3 levels fairly high (much better absorption than fish oil capsules). She came up with a really fun way of getting him to eat it, rather than just slapping a fillet of steamed salmon in front of him (it's a bit boring after a while). I'm going to try it this weekend:

Slice one cod fillet and one salmon fillet into strips (gougons). Dip them first into beaten egg, then into home made breadcrumbs and fry them for 3-4 minutes each or until golden brown. The fun bit is you then have a guessing game, whilst eating them: Pink or white? The one who guesses the most right, wins!

I also shared one of those Homer Simpson style "Doh" moments....

It's becoming increasingly difficult to find squash that isn't "no added sugar". It seems these days that everybody is harping on about cutting down on salt, sugar, saturated fat, eggs, cheese..... everything really.... I know! Lets just drink water!

Oops.... there I go, on my high horse again.... I'll get back to the plot....

Sugar free drinks may be better for you in terms of reducing ones sugar intake. What they don't tell you is that the sugar has been replaced with aspartame and this is a HUGE problem, in my experience. My children DO NOT have sugar free drinks because the aspartame causes more problems. For this reason, we always buy high juice squashes (not sugar free ones) or real fruit juice. A couple of weeks ago, George had been particularly helpful and he asked if he could buy some chewing gum. I allowed this and didn't really given it a second thought. The following day, come mid-morning, he had turned into the Tasmanian Devil, was completely uncontrollable, and I started to panic that the Dore Programme had stopped helping him..... Then came the "Doh" moment. I checked the ingredients of the chewing gum, and sure enough, it was sugar free and LOADED with Aspartame. That'll teach me to take my eye off the ball...... thankfully, by the following day he was much calmer.

Finally, in my haste to make my previous blog post, I forgot a rather significant and pleasant occurrence. Earlier in the year (pre-Dore) George was in danger of being excluded from Scouts because his behaviour could not be efficiently managed while he was there. We were recently told by his Scout leader that for the last 6 weeks, George's behaviour has been exemplary.

Woo Hoo!!!!

He's off to Scout camp this weekend, and for the first time ever, I'm not worried that he'll be disruptive.

I really like this feeling. :o)

Three months in....

and I can't believe the changes we are seeing since George has been on The Dore Programme.

Our house is generally a calmer place and I've stopped grinding my teeth in my sleep.....

When we first started "doing Dore" I must be honest and say that I could not see how these silly little exercises would help. We have religiously kept to the routine, so I think this helps.

What changes have we seen? Well, they're very subtle ones, but already the improvement in our child has made the cost worthwhile.

He's quieter, generally, and those awful non-stop noises have all but gone. I can't remember the last time he made the popping noise (that was the one that drove me almost insane).

He still argues but before Dore he did not know when to stop and it caused so much tension in the house. The arguments now only last less than a minute (as opposed to up to an hour on bad days).

He's started to remember to do things! Oh my goodness, what a shock it was when he thought for himself and remembered to pack his PE kit, the night before! I nearly fell over....

I ask him to get the bins from the top of the drive and bring them down behind the house... he doesn't complain, he just does it... and the next shock..... he actually does it without messing about!

He still has lots of issues that need to be addressed, but to see these changes in these last couple of months gives me hope for his future.

I have a friend who is a Doctor and he was absolutely insistent that there is nothing that will "cure" ADHD. He sees it as a hormone imbalance in the brain, rather than a developmental problem which can be overcome. Interestingly, when he and I were having this debate, I received a message from a Mum who uses the Dore Talk Forum and she suggested that George may have Sensory Processing Disorder. As I understand it, this is another relatively new diagnosis to behavioural difficulties experienced by some children, and can be attributed to early years hearing loss. There's a reasonable amount of information out there regarding this, but the scary thing is that the main symptoms are more or less the same as ADHD. I started to wonder if George doesn't actually have ADHD, that perhaps he suffers from SPD because he has had hearing problems since he was 2 or 3 years old (and still does). I started to try and find out more information, but with a shortage of time, it got put on my "list of things to do".

I doubt that I will spend much time looking for more information, because I don't care. I really don't care what label people want to attach to my child. It doesn't matter. What matters, right now, is that The Dore Programme is helping where all manner of drugs and behaviour strategies failed.

How does George feel about the programme? Well, there have been a few times when he's moaned a bit about doing the exercises. I have a simple sentence which stops him in his tracks.

"That's OK George. You don't have to do them if you don't want to. As long as you know that you won't get better if you don't do them"

The look on his face.... it's like "Oh God, I don't want to be like this for the rest of my life" followed by "No Mum! I have to do them!"

Our next assessment is 6th May. I'm looking forward to it.

Where's my padded cell?

I need it. We've had a tough week. Himself has been away, working, so I wonder if I'm feeling so wrecked because I've been single parenting. I spoke to the school last week about my concerns over George's "people who hate me" list. They confirmed what I already knew - that this is not actually the case. I expressed my feelings about his English lessons - if there's going to be a problem, it will be in English, and it seems that there are some pupils who know which buttons to push. They wind him up and then sit back to watch the entertainment as George digs himself a really deep hole. The person I spoke to told me that she was worried that if this was not dealt with, quickly, George would carry his "easy target" label throughout the rest of his school life. In lots of ways he's typical of a boy of his age - I'm sure this isn't all one sided because I know that his behaviour can be irritating. However, on Thursday of last week I received a letter from the school informing me that George would be in detention for 1 hour after school on Monday. I telephoned the school again and spoke to the SeNCo. It started off as a conversation about his detention and ended up with a promise that the English teacher would be asked to telephone me. She did, and she explained how difficult she finds it to deal with this particular class. Evidently there are a few pupils in the class who are disruptive and a couple in particular who are just plain naughty. She tells me that she is very sympathetic to George's situation and understands his condition. She also told me that whilst she called for the SOC, she had made it clear that she didn't feel that George should be punished. George was not able to control himself and she needed to be able to teach for at least some of the lesson. I fully understand her position but I got a bit cross about this, so I put it all in writing to the school.

"Further to our telephone conversation this morning, I am pleased to tell you that I have now spoken to the English department, and have been advised that it would not be appropriate for George to move sets in this subject. However, I still have very grave concerns regarding this situation. Having spoken to Ms xxx, it seems that George finds it very difficult to settle in this class. The mix of pupils, I believe, is quite a problem. It would seem that there are a few pupils in the class who actively seek to antagonise George which results in his loss of self-control. We have tried to encourage George to ignore their taunts, but he finds it very difficult.

It would seem that the best way to help George (in this lesson) is to provide him with a 1-1 teaching assistant. However, I appreciate that resources are tight and this may not be possible. If George is not able to have a teaching assistant in English, I think it would be appropriate for him to have access to the special needs department on the occasions when he is not able to control his behaviour. This would enable George to work effectively and would also mean that the English teacher can teach the rest of the class. I would expect this to be at the Teachers discretion. Whilst we are not happy at the thought of George being excluded from the lesson, I cannot think of any other way, at the moment, to solve the problem.

You mentioned that it may be appropriate to put George on report, and get him to report to Mr xxxx. I am certainly willing to try this but our previous attempts to help George improve, using a report card, failed. My main concern, if a second attempt is made which doesn’t work, is that George will see this as yet another of his own failings. I will leave this decision up to you. If you think it will be beneficial to George, I will give my full support.

Finally, I would like to express my concern that George has to attend a detention, after school, on Monday 3^rd March. I find it very difficult to understand why George is being punished for something he cannot help. George has a known and diagnosed disorder which includes impulsivity - lack of self control and lack of foresight. He is often deliberately antagonised by other pupils in his English class, which would certainly add fuel to the fire. His English teacher has confirmed this to me today. I realise that ADHD children can be extremely difficult to deal with but, if George were deaf, would he be punished for not listening properly?

He will be attending the detention, against my wishes, because it is important that he adhere to the school policy. However, I would like a full explanation as to why this punishment was deemed necessary."

Sadly, there was no intervention and George attended for detention. I hate this situation, with a passion. I even considered giving him the meds again, until we see an improvement through the Dore Programme. However, once I had calmed down (had a bit of a temper tantrum, stamped my feet and cried) I decided that my original resolution would have to be followed. At the moment, if we return to the meds, George may see this as another failure and he really needs to succeed in something right now....

In the meantime, George has added to his list of people who hate him. He came home from school on Monday (after detention) with mud all over the front and back of his trousers, all over his school coat and also his school bag. Evidently two of the main antagonists pushed him over... (once each). He's angry and I don't blame him.

We haven't had a response yet, to the letter we sent. Himself has returned home and he isn't as patient as me. I think the school will be hearing from him.

How's the Dore going? He's still right there, 100%. He really wants it to work. We haven't noticed any improvement as yet, but it's only been three weeks.... not that I'm impatient or anything......

I have a list.....

... of all the children at school who "hate" George. They don't, but it's his perception that they do. Boys will be boys and all that... He's come home today, wound up, anxious and frustrated. He's anxious because one of the "big" boys pushed him over. This resulted in torn (ruined) school trousers and a small cut to Georges' hand. George tells me that this "big" boy always does this to him. He was worried that I would be cross because I need to get him yet another pair of school trousers. He's only been at this school for two terms and he's going through a pair of trousers per term. I suggested that, whenever possible, he avoid this boy to prevent this happening again.

He then launched himself into qualifying his statement of "everybody hates me".

"They give me a hard time because I'm different to them. They call me names like 'monkey boy' and 'freak'. I can't help it if I have ADHD. They do things to wind me up. When I do the same back to them, I get told off by the teacher and sent out of the class. Then they all laugh at me because I'm being sent out. In technology, today, two boys kept throwing my stuff on the floor. If I leave it there, it will get trodden on, or I'll get told off by the teacher because my stuff is all over the place. They kept doing it today, and I got so cross that I threw one of their pencils on the floor. I got told off for that, too. In English, they were winding me up so much I had to ask the teacher if I could be excused so that I could go into the corridor and calm down. She came out after a minute or two and told me to go back into class. I tried to explain that I hadn't calmed down. She made me go back in. It ended with her sending for the SOC (Staff on Call) and some of the class started laughing at me again because I was in trouble".

I don't think for one minute that every minute at school is traumatic for him. It is very hard, when you're struggling, to see anything positive though. And I know that George is struggling. If he was in a small school, with small classes, his behaviour would improve, because there would be less stimulus. Large classes with a lot of noisy children stress him out. He would do very well if he worked alone, in a quiet room, but it has the potential to turn him into a very solitary and lonely person.

Georges' Dad (often referred to as 'himself') works best and is very happy when he is alone. He can concentrate, has nobody else to consider but himself and achieves a lot. This gives him a sense of wellbeing. It is my belief that he suffers from ADD. He certainly exhibits a lot of the signs. However, he has learnt social skills (you would expect this from a chap in his forties) and he has lots of friends. To deprive George of his peers would also deprive him of the ability to learn social skills. It's at times like this that I could really do with a crystal ball (couldn't we all?!) I don't think that I worry too much about our youngest daughter and what her future holds. She has lots of confidence, lots of friends and seems to be doing quite well at school. Her parents evenings are always a pleasure. I worry a lot about what the future holds for George. He's been telling me for nearly two years that everybody hates him. He recognises his faults but seems powerless to do anything about them. Right now, this minute, he has the TV on. I've told him he isn't to watch TV today, but he's forgotten and I don't have the heart to remind him. He's had a terrible day. If that makes me a bad parent, right now, then I hold my hands up to it. I just can't face any more upset today.

The Dore exercises are progressing well. George hasn't complained about doing them and is trying hard. :o)

Taking the plunge...

Following an assessment at the Dore clinic last week, it was recommended that George start the programme. I have been following a number of on-line forums which discuss the success (or failure) of children on this programme. It would seem that a number of ADHD children have benefited substantially. There are, of course, those that have completed the course and have not benefited in any way. It doesn’t work for everybody.

George has an exercise regime specifically targeted to help him develop skills in areas where he has demonstrated a weakness. He has a set of three exercises, of which he must carry out two, twice a day. Each exercise must be done for a total of 5 days and then he moves on to a different exercise. At the moment they are quite easy for him, but we are focusing on the importance of control. Because they are quite quickly rotated I am hopeful that they will hold his interest and won’t become a chore for him. Also, when he has completed each exercise, I am hopeful that this will help to boost his confidence and he will start to believe that he can learn to control his actions.

It was explained to me that most children get worse before they get better, and I have read anecdotal evidence that backs this up. It generally seems to occur at about the 8-10 week stage. This is seen as a positive thing, because it would appear that for those children who initially regress, the long term outcome is generally very good.

Once he has mastered the physical exercises, he will be presented with some mental exercises which he must do at the same time as the physical ones. This normally happens at around the six month stage. My understanding of this process is that this will teach his brain to multi-task – this is something that he does not seem to be able to do currently and I believe that this may be the key to unlock his ability to control himself.

Currently, George has a very positive attitude regarding this. He really wants to try to help himself. We have a follow up appointment in six weeks time (and every six weeks thereafter) for further assessment, at which time his programme can be adjusted to suit his progress.

The Dore Programme is really still in its infancy, despite being around for a number of years. I watched a short interview today, featuring Kenny Logan, who has completed the Dore Programme to help with Dyslexia. He maintains that he couldn't read a word before he was 30. He said, with the help of the Dore programme, that he is now learning more every day. He learnt his vowels at 30 years old, has now learnt how to break down words (much like a child does, when they first learn to read) and feels that he is going from strength to strength. He explained how his Mother arranged for extra tutoring but even though he tried hard, he couldn't get the information to stay in his brain - he said he couldn't process it adequately to be able to retain it. George is not dyslexic, but I feel that there is some mileage to be gained by giving it a good try. Parents of ADHD children realise, quite quickly, that you can explain to your child how damaging their inappropriate behaviour is, but they cannot retain or process the information. We are often seen as poor parents because we know there is no point going on, and on, and on at the child. It won't make any difference because after 5 minutes they will have forgotten...... We can't spend our lives banging our heads against a brick wall, upsetting the whole family and gaining.... precisely nothing.

I am relieved that George has been accepted on the programme. At least I know that we are doing everything we can to help him. I have to be positive and believe that this will work. I hope that this positive attitude will help and encourage George to see it through to the end.

Pass the steak....

His frustration and lack of control is really getting out of hand now. He's managed to accidentally give his little sister a black eye. She wouldn't get out of his room, so he made her, and in the process she banged the side of her eye against the door handle. Screaming ensued, from both of them. She, because she was hurt and scared; He, because he was scared that he'd done her some serious damage. Thankfully the worst she will have is a black eye.... but one inch to the left and it would have been a different matter. I feel sorry for both of them. He can't control his actions and she has to put up with his lack of control. Thank goodness she is quite bright and also, very caring. Once she had stopped screaming and we were able to administer first aid (a bag of frozen peas!!) she told me that I should really go and "sort George out" because "He's very upset Mummy. He didn't mean to do it - it was an accident". By this time, he was howling, in his room. He got so upset, he was sick.

Both are sleeping peacefully now which gives me time to beat myself up. I ask myself if there was any way I could have prevented this happening and the only answer I come up with is to supervise him constantly. He's 11 years old and doesn't want his Mother following him around the house "just in case" he does something he shouldn't. I know he would hate it, and his logic would tell him that he can't be trusted and that would push his self esteem even lower. I know he will suffer, inside, because of this incident. As parents, we have to explain that his actions where inappropriate. This is what parents must do. I also know that by explaining how wrong he was, it will push him one step further down the ladder. At the moment, for every one step up he takes, his lack of control makes him move down two steps. He is, without doubt, a very caring and loving child. He was distraught when he realised what he had done and would have done anything to be able to undo it. I want to be able to save him from himself, but I cannot be there, every second of every day to second guess what he may do next.

10 days until we go to the Dore centre for his assessment. I'm praying they can help him.

For my next trick.....

I could waffle on for ages about the biology of ADHD. It doesn't mean a thing. What really matters is how it affects the child, and the family of the child. Today George was given lunchtime detention for trying to bite a Teaching Assistant. His frustration got the better of him and he reverted to the behaviour of a two year old going through the "terrible twos". Thank goodness, his school teachers understand that he is not doing this out of malice. He is really a very caring and sensitive boy. He sometimes pretends he isn't but adults who know him realise who he really is, under all the nonsense he displays. His face, when I arrived to collect him from his year tutor, was enough to reduce me to tears. He looked so sad, so frightened, so sorry...... He has apologised to the poor woman, and rightly so. He doesn't know why he did it. He knows it was wrong. I spoke to his ADHD nurse this evening and she was very supportive and understanding. She knows he can't help it. It doesn't help in the long term though.... I don't know how I manage to function from day to day. I am deliberately with-holding his Ritalin on the basis that the long term effects are not fully known. I don't want to be responsible for giving him a class A drug that "may" fry part of his brain. Without it, he is not coping. What to do? We have booked an assessment at a Dore clinic, because it's currently the only non-medication option that we have. It's two weeks away, but I need it now! There's a chance that we're throwing away £2500 on this for nothing, but I can't sit here and do nothing. I can't give him the drugs unless I have exhausted every other opportunity to help him and I feel as though we're caught between a rock and a hard place. Unfortunately the space between the rock and the hard place is quick sand.

George is in the garage with his Dad, right now. They're welding. George is very good at it. He needs to end the day on a positive note.

Monopoly isn't supposed to be so hard!

A game of Monopoly, played with your children, is supposed to be fun. Not so with George. He loves playing games but cannot sit still or be quiet for more than 15 seconds. We experienced a whole range of noises from general popping sounds to car engine sounds as he moved his piece around the board. His constant fidgeting meant that houses moved from one property to another and money was flying every where. Thankfully, we put a timescale on the game. It was a long hour and a half. Many people would comment that they don't see a problem, and surely this is just how children are? The noises can be likened to listening to a radio station that isn't properly tuned in. You only hear a noise - it doesn't mean anything and it's not something a person could listen to for very long. You have to live with a child who suffers from ADHD to know just how much stress it puts on the whole family. A couple of nights ago his frustration degenerated into a screaming rage resulting in him slamming doors and banging his head against a window. He threatened to leave home..... I dread to think what our neighbours must be thinking when they hear this child screaming and banging. He picks things up and smashes them too - generally a much loved lego model (thank goodness it's lego because he can rebuild it). He smashed his new lego AT-AT into pieces and then told me he'd done it because he wanted me to know that he must be really angry to have smashed it. He has such perfect logic but I can't seem to get him to understand that he only has to tell me he's angry, not demonstrate it........

Trying to think of something positive about today, I came up with this:

Today, he cleaned his school shoes without arguing about it first. :o)

Sometimes, I don't know how we survive a week without losing it completely. Each day is a terrible struggle for all of us. We lurch from one crisis to another and, whilst we try hard to be proactive, it's not possible to foresee what George may do next or how his behaviour will affect the whole family. Today we received a call from the school SeNco because George (and five other children) had disrupted the last lesson so much that no teaching could be done. George was made aware of how disappointed the school were and he did apologise. He will always apologise when he realises how his behaviour has affected others. His biggest problem is not being able to learn from his mistakes and think about the consequences of his actions. That's just children, isn't it? Of course, all children must make mistakes - that's how they learn. ADHD children don't seem to be able to grasp the concept of it........

Not two hours later, we received a call from his Scout leader requesting that George was collected from Scouts because his behaviour was just too bad. We had explained to him (again!), before he went to scouts, the importance of behaving in an acceptable way. It doesn't make any difference how much we try, he just cannot seem to get it to sink in.

He came home, very unhappy because he had been excluded (understandable!) and was sent to bed. As he rushed past me, the distraught look on his face reduced me to tears. He sobbed for a while and eventually calmed down. He explained to me that he knows that he needs to try and stop doing the things that annoy and irritate others..... he has always known this but by the time he realises that his behaviour is not acceptable, it's too late. Any mother struggles to deal with their emotions when a child of theirs is so unhappy. Frustrations abound on all sides - our child is frustrated with himself because of his inability to control himself and we are frustrated with ourselves because of our inability to help him.

There is no support from the professionals because a) the lack of resources and personnel mean that too few people are trying to manage too many cases and b) we have withdrawn the Ritalin which is going directly against the doctors' recommendation.

It brings to mind the old cliché:

"We're damned if we do, and we're damned if we don't"

In the beginning.....

George was born in 1996. He was born by emergency C section because of foetal distress. For the first six weeks of his life, he was just a normal new-born baby. From the age of six weeks he never slept for more than 45 minutes and spent an abnormal amount of time screaming. As an experienced mother (George was my third child) it seemed to me that there was something wrong, but my health visitor and also my Doctor said that he would settle down...... eventually. Skip to nearly 1 year old and we are now suffering from sleep deprivation. The chance arrival of a locum Doctor made me follow my instincts with this child, that there was something fundamentally wrong. On the advice of the (locum) Doctor, I changed his milk to Soya milk. The change was immediate and the screaming stopped, he slept through the night (praise be!) and we felt that all was well in our world...... little did we know the hell our lives would become.

George started 'play school' when he was two and a half. Within a few weeks, there were queries regarding his inability to sit still. I put it down to a very active imagination, along with a tendency towards hyperactivity. My understanding though, of hyperactive children, was that they rarely slept and because George had outgrown his sleeplessness, he couldn't be clinically hyperactive (in my opinion). We muddled through the following two and a half years until he started Primary school at age four and a half. By this time, we had a fourth child - a daughter - who was, and still is, an angel. George had also developed Asthma and was taking a steroid inhaler to treat this. We discovered that, within 3 days of using the inhaler, he would become overly aggressive and we found out that this is a side effect of steroid inhalers (why do doctors never tell you this?). We used to send a note into school:

"George had an asthma attack at the weekend and used his inhaler. This is your three day warning!"

His first year teacher queried ADHD. I didn't know too much about it, but at the time I was going through my "I'm a bad mother - it's my fault" phase and generally beating myself up about his bad behaviour. I told her that he couldn't possibly have it because he is able to concentrate for long(ish) periods of time when he's involved in something he really loves.

Around this time, we looked at the possibility of food intolerances being the main cause of his hyperactivity and impulsive behavour. The following two years saw George eating only natural food - no additives, preservatives, sugar or colourings. We also started giving him omega 3 fish oils.

It took two years to get an appointment with the allergy specialist at our local hospital. I was convinced that once we got the diagnosis, we could then start to include other foods in his diet. George had a pin-prick test, using the most common triggers of food allergies (eggs, wheat, milk, peanuts) and he was also tested for airborn allergens (house dust mites, dogs, cats and horses etc). The result was that he showed one reaction - to house dust mites - and this was the cause of his asthma. A further two years and I managed to control the asthma without using steroid inhalers. We steam clean the house once a month to keep the house dust mite allergens down to a minimum and, at the time of writing, George has been asthma free for nearly four years. :o)

As a result of his allergy testing, we abandoned the "totally natural" diet, although have always tried to keep his sugar intake to a minimum. We noticed no difference. Therefore, I had proved to myself that his behaviour was not due to eating modern food.

Back to the plot.....

His year two teacher found a strategy that worked for George and thoughts of ADHD disappeared because he now seemed to be behaving like any other normal, although very active, 6 year old.

His year three teacher couldn't cope AT ALL. I remember the day when she stormed across the playground at the end of the day, with George in tow, and told me "I don't think there's anything wrong with him - I just think he's a very naughty boy!" I cried all the way home..... That evening, George informed me that he thought I should leave home. When I asked him why, he said "because I can't be good". :o(

Around this time, George developed suicidal tendencies and his self esteem was in minus figures. We had tried many different strategies to help him, all of which failed, so we decided that George should be assessed for ADHD. We got a referral through our GP, completed the Connors assessment and waited for an appointment.

And waited....

And waited....

After 12 months of waiting I telephoned our local ADHD clinic and had a bit of a temper tantrum about the waiting time. George was getting worse.... his little sister was, by now, copying all his bad behaviour and I had visions of having two children attend this clinic for some considerable part of their lives. The thought of having another child on the waiting list seemed to spur them into action and we received our appointment within four weeks. Finally, I felt as though we were making some progress.

On the day of our appointment, the psychologist confirmed that George was indeed afflicted with ADHD (he had a connors rating of 27/30) and he was prescribed Ritalin. (I am aware that the process for dealing with ADHD in children has changed slightly since George was diagnosed and other options are available these days).

It was like a miracle cure for us. His behaviour at school improved drastically and his schoolwork improved almost overnight. We felt that he now had good prospects for the future (and I'm not talking academically).

This is the background, very much condensed.

Lets skip four years...... and come (almost) to present day......

At age 11, we were finding it increasingly difficult to reconcile with the fact that George was taking 40 - 50mg of Ritalin a day. I was also increasingly concerned about the long term effects of taking a stimulant drug. I wanted to get him off the Ritalin, but had a lot of concerns. These were my thoughts, fears and hopes:


A reduced dose will not really work. Too little and you might as well not bother with it. We have discussed this in depth quite recently, himself and I. I want to try and get him off the stuff, and himself suggested a half dose. His dosage has recently been increased because 15mg just wasn't doing the business any more. Children grow and Georges' normal (previous) dose was based on his weight. He was becoming less focussed at school and his teachers were struggling. Without the Ritalin, it's real struggle, more than you can know, unless you live with a child who has ADHD.

They say that knowledge is power. To try and increase my knowledge I have recently read a book called "the Edison gene".

As a result of this, and other research I have carried out over the past few years, I am trying to look at my child through more positive eyes. Let us imagine for a moment, if 90% of our children were like George. The educational system would be set up to teach these children according to their attitude to learning. ADHD children are the most enquiring and alert. They do not respond well to our current teaching methods because they are constantly scanning. They do not see the benefit in being taught the 7 times table. They do see the benefit in experimenting, exploring and inventing because these are activities that stretch the imagination and keep them focussed on "what could be possible". To teach these children effectively, they need to be able to work at their own pace and bypass what is irrelevant to them. Our education system will always be tailored to meet the needs of the majority. The minority will be pushed to one side because

"I have 27 other children in the class - I cannot possibly give this child special attention"

"I cannot cope with him first thing - he's too lively"

"He gets easily bored - I don't know what to do to keep him interested in the subject matter"

If the majority of children were like George, teaching would take a more "hands on" approach. It would be more structured towards physically doing, rather than just being talked to. As an example:

Thomas Edison was a prolific inventor. At age 16 he devised a railway signalling system that was used for nearly 100 years. Thomas Edison had ADHD. His mother removed him from the education system because she could see the harm that was caused by un-informed teachers and their inability to deal with children who did not conform to what was accepted as normal. As a result he was allowed to develop into the person he was capable of being. At the end of this I will tell you more about him and how he would fit into todays society.

I want my child to develop into the man he needs to be to get the most from his life. I am frustrated by the lack of understanding. I have read many articles by nutritionists who have poo-poo'd ADHD, saying that it is completely down to todays diet of junk food, additives and preservatives. They say that if we fed our children natural food - fresh meat, vegetables and fruit etc., all these symptons would miraculously disappear. In my experience this is not true. It is true that if you have a hyperactive child that you should avoid too much sugar. Sugar is an "instant" energy food, and will give the recipient a sudden abundance of energy. Sugar free drinks are just as bad for a child with ADHD because they react to the artificial sweetener. We tried for 2 years to control this disorder through diet - it had no effect at all, except to give me a good knowledge of E numbers!

So, the diet has no effect, and he cannot conform in the way that our society deems acceptable. 20,000 years ago he would have been the leader of a group of hunters, due to his amazing ability to constantly scan, to be able to jump instantly from one activity to another.

Today, we give our children a mind altering drug to force them to conform. In one way, this is a positive thing because it enables them to integrate with our "normal" society. The other side of the coin shows that we are inhibiting the amazing gift these children have been born with, which will leave them............. where...?

I have seen what my child is capable of. He is 11 years old and has recently built and programmed a robot (with the aid of written instructions). I want to enable him to grow his capabilities in the way that suits him. He is not like other children and I don't want to give him drugs to make him like other children.

There is a theory that children who take ritalin are inhibited from learning how to be "socially acceptable". They cannot learn that skill because the drugs automatically stunt their ability to learn through doing. In other words, they understand the theory but do not have the practical ability. Added to that is the unknown effect of long term ritalin usage. There are some adults, having taken ritalin to control ADHD in childhood, who are reporting short term memory problems. It's not known if the short term memory problems are due to taking ritalin, or if it is a long term symptom of ADHD.

This unknown element scares me and that's another reason to try to get him off the drugs. I want him to be able to learn how to control his impulses. He cannot do this while he is taking ritalin.

The following passage had a profound effect on me, and has made me think about what is best for my boy in the long term

Yesterday's child was born in the 1800's. As a young boy, he was considered medically fragile. Every respiratory illness known to mankind in that age seemed to seize him. Even though Yesterday's child spent many of his early years ill, this did not stop his insatiable curiosity and boyish escapades. Today's child would be described as "just being a boy."

Yesterday's child often found himself in risky life-and-death situations. One time, around the age of five, this boy nearly drowned in a canal; and later he almost smothered as he sank into the depths of a grain elevator. Today's child would be described as "having no common sense."

Yesterday's child was found asleep in the barn in a nest he had constructed, lying on top of the chicken and goose eggs he was trying to hatch. Today's child would be called "weird, eccentric." "Get off those eggs, you'll crack them!"

Yesterday's child drove his parents to exhaustion by his persistent questioning of the world around him, determined to know the "whys," "what fors," and "what abouts" of his world. Todays child is searching for someone to ask the questions to

Yesterdays child, with no malice aforethought but only out of the intense curiosity of an inquisitive mind, set his father's barn on fire. For this he was publicly thrashed by his father, who tried to instill in him the serious consequences of his actions. Todays child would be called a "juvenile delinquent".

After only three months of formal education, Yesterdays child walked out of his school in a fit of rage. Running home, he could hear the thoughts of the schoolmaster echoing in his head: "stupid... stubborn... difficult." Thus, at the tender age of eight, Yesterdays mother gave the schoolmaster a piece of her mind and withdrew the boy from school. From that day onward, she became Yesterday's teacher. Todays child would be called "a problem child, a bad boy, oppositional." And Today's mother would be told she was "highly excitable, and coddling her child." She would be encouraged by all the experts to force her child to return to school because "He'll outgrow it. He's got to learn to adjust."

Yesterdays child went swimming with a friend in a nearby creek. When the friend didn't surface for air, Yesterday's child waited for what seemed like forever. As darkness fell, he - in his own unique five-year-old logic - concluded that it was time to go home. As the town was trying to piece together the disappearance and drowning of his friend, Yesterdays child tried to explain how he waited for what seemed like forever... Todays child would be treated for "conduct disorder" and undoubtedly find himself one step away from the juvenile justice system.

Yesterdays child just couldn't comprehend consequences; that much seems true. One day he attached wires to the tails of two cats and energetically rubbed their fur. This experiment in static electricity went astray when he was brutally clawed. Todays child would be in long term therapy for ADHD, Pervasive Development Disorder, or some other behavioural disorder.

Yesterdays mother complained constantly about the life-threatening condition of his bedroom. Fearing for the safety of her family and any other who ventured into the family home, Yesterdays mother moved his experiments into the cellar. Yesterdays child called it his laboratory and immersed himself in science, to the exclusion of what other "normal" kids were doing at his age. Todays child would be labelled "dysfunctional." Todays child would be spending time in a court order alternative school programme, meeting with a psychiatrist twice a week for therapy, and be attending a class to learn social skills.

At age twelve Yesterdays child insisted on going to work and began successfully earning his own wage. Todays child, at that age, would face a closed door to the world of mentorship in the workplace. Todays child would have to search beyond home and work for other avenues to have his abilities accepted and appreciated.

As you read about yesterdays child, you are probably wondering how he could have survived and how he could have contributed to society in a positive way. Clearly, yesterdays child had somebody who accepted his uniqueness, changed his environment to meet his needs, was not intimidated by his gifts, and tried sincerely to see the world through his eyes.

Yesterdays child's name is Thomas Alva Edison.

I am not saying that my child will be this clever, but I want to give him the opportunity to be all that he can be.

Our biggest problem currently is with the school. I can just about deal with him, un-medicated, at home. We have agreed that the school will not be able to cope. This is because they don't seem to want to understand where he's coming from. The SeNco is a waste of space, in my opinion. She was his year 5 teacher and his general attitude to learning, whilst in her class, deteriorated. In year 6, she still takes him for a few lessons a week. She complained that he doesn't concentrate well in her class and gets easily bored. A basic understanding of kids with ADHD would give her the answer to this problem. Kids like this need to succeed and be recognised for their little successes - there has to be something positive in their lives. As an example: he has an amazing ability to design and construct. Both his Y5 and Y6 teachers have specifically requested that he does NOT take any of his completed projects into school because they are made from lego and toys are not allowed. They have not seen his robot. When he talks to his classmates about the robot he has built and programmed, they don't believe him because he cannot produce the evidence. When I asked them why he's not allowed to take his models in, I was told that if George was allowed to take toys to school, then it would not be fair on the other children. I understand this, up to a point, but we are not talking about toys - we are talking about his motivation, his immense pride in his achievements (so desperately important for ADHD children). I try to see it from a teachers point of view, but there should be a way to overcome this. If he was deaf, the teachers would need to make allowances for that disability. I am really sick of being told that they have to treat George the same as the other children - he is NOT the same - he's funny, witty, bright and can do anything he sets his mind to. Three months ago, his Dad taught him how to weld. How many 10 year olds can weld?

The other ongoing problem is how he stands out by being different. We all know that children can be unkind and very often will target kids who are different. George has been targeted and often comes out of school at the end of the day, unhappy and frustrated, because some of the other children deliberately wind him up and then mock him when he over-reacts.

It bothers me that his teachers are only happy when George has made himself invisible. Comments like: "He was very good in art, today. In fact, I didn't even realise he was there" make me want to bang my head against a brick wall. This child has such a rich personality but nobody at school is interested. Two months ago his Y6 teacher asked me if there was any way I could give him his meds earlier, because he's very lively first thing, but by 9.15 he has settled down a bit. After I explained the consequences of this - his second dose would have worn off by 2.30 and she would have a hour "full on" at the end of the day, she decided to keep it as it is.

She told me that he will not go up to the playground, first thing, to play and instead comes running into the classroom 10 minutes early, wanting to help her. The example she gave me was that he wanted to fill the glue pots. In my opinion, this is a good thing and would be beneficial to all - he doesn't like playing in the playground - there's no structure to it and there is too much stimulus - he cannot cope with it. The task he suggested for himself would be quite therapeutic and something he could concentrate on (clever boy!) She refused to allow him to help. Instead she sent him back outside, and then complained that he spent 10 minutes messing about, before coming back in with the rest of the children. By this time he was completely off his head with boredom and took another half an hour to calm down. It's interesting that she seems so desperate to control him through his medication but when I've suggested possible alternatives, she looks down her nose at me. I don't really blame her for that - after all, she's a trained professional, but I know my child better than her and my suggestions (and his) should be given some merit. These two teachers consistently demonstrate a total lack of understanding with regard to him. My ADHD nurse rang the school to offer support and to my knowledge this has been turned down on the basis that they are managing perfectly well, thank you. Because of this we have decided that it would be best for George to have a full dose of Ritalin on school days, with complete breaks on non school days (on the non-ritalin days we are giving him Omega-3 oils to blunt his pointy edges )

He only has 6 weeks left at his current school and to be honest I don't think there's much more that we can achieve, given the short space of time. We plan to give him a summer that is medication free, in an effort to help him learn some self control. He responds well to people who believe in him. He has attended two camping weekends with his scout troop and they have experienced very few problems. Part of this is down to the activities, and part of it is due to his respect for his scout leader who believes that George can do well (and George can sense this).

I have also started to employ two very useful phrases:

"Just try it one more time. I know you can do it."

"It's not about how fast you can do it, it's about how well you can do it"

Both of these simple phrases are starting to work (albeit v e r y s l o w l y). If I can show him that I believe in him, I hope that he will start to believe in himself.

The senior school that he will be attending in September seems to be more pro-active and I have more confidence regarding support. I have an appointment with the SeNco next week, and once I know more about their strategies I can make an informed decision regarding his medication.

He doesn't seem to be at all worried about going to the "big" school. He's almost like a little warrior and I think he sees it as an exciting new adventure. If he started to show any signs of stress, I know that by reinforcing the "exciting adventure" aspect he would happily accept the situation. I have to be positive about his new school because he's very aware of undercurrents of tension and if he thinks I have any negative feelings about it, he will automatically assume that it's because I don't think he can do it. My main concern is that his new teachers will need to have an open mind regarding George. I know that he can achieve much, given the right motivation and respect.

For him, personally, he will struggle to be accepted for the person he is. He comes out with such funny things and he won't stop to think about how it will be perceived by others.

One of our friends often comments on how George made him laugh when he asked:

"What have you been up to then, George?"

George was watching a natural history programme, so his reply was short and to the point:

"I went to Nethercott Farm last week and I've just done a pooh."

He never once took his eyes off the TV.

He often reminds me of Jerry Lewis in the Nutty Professor!

The above is an extract of my thoughts, which were written some six months ago. We are on the verge of some huge changes and this blog is my way of keeping track of where we've been, and where we're going.

George moved up to the senior school in September 2007. For the first 6 weeks he attended, he had his normal Ritalin dose every day, and our daily hell began at 4pm when the drugs had worn off. The arguments, mood swings, noises (which I describe as similar to Tourettes) and general inappropriate behaviour had become a very unhappy way of life. The school, however, had been very supportive and I decided that now was a good time to dispense with the meds. During the Autumn half term, we discarded the Ritalin. This was done with the full knowledge of his specialist who recommended that we continued to give him the drugs. I told him I needed to find a better way. I begged him to help me. He told me that he couldn't recommend any other way because Ritalin was the only thing that has been clinically tested. And of course.... it works. I am not denying that, for George, the Ritalin was a quick fix. But, I keep coming back to the worry of the long term side effects.........

We have identified a possible alternative which may help our child. It's a 12 month long training programme that is supposed to help to develop the "broken" neural pathways which prevent George from being able to learn the consequences of his actions. It is supposed to teach him how to manage his daily life and to find ways to keep his over-active mind focussed on the task at hand. His initial assessment is on 13th February 2008. Between now and the end of the course, I aim to update this blog as often as I can. If you accidentally stumble across this, and find it of interest, please leave your comments.

Today, George wrapped an elastic band around one of the cats' paws. I don't know how long it had been there when I found it, but the poor creatures' paw had started to swell. George forgot that he had done it and looked distraught when I showed him. The cat, and George, have both recovered well.