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.
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