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......