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.