the pennine pen

Photo Friday

2008-05-23T10:46:00.002+01:00

Asperger's-- the anti-nit treatment??

2008-05-19T09:29:00.003+01:00

"Mom, you know how there's another nit outbreak at the school right? --erm, yes. "Well, I don't have any, I never get them now, and you know why? --well because we've been using tea tree and special shampoo to ward them off-- "NO, no, no, its because of the Asperger's, well that and the ADHD, they don't like it so they don't bother me."

Oh, so that's a good thing then...

Photo Friday

2008-05-16T09:49:00.002+01:00

More Help? More Paperwork!

2008-05-12T14:00:00.000+01:00

I met with my son's teacher again on Friday and spent the weekend writing a letter to the council requesting a statement for my son, and also filling in more paperwork for the school to submit on his behalf. The behavioural support woman spoke to us about observing our son, she was dismayed at some of the things going on at the school. Music class for instance, is a particular bane to my son (and many other kids as well), and she told us that there are 60 kids in this weekly session (with an outside teacher), all sitting for the one hour lesson. They get to play an instrument (BORING triangle as my son says, whereas he'd rather have a bongo, but is not allowed?!) but otherwise the teaching is dull, uninspired and well, boring. For someone with my son's issues, this is like being in a torture chamber.

But I can respect where my son's teacher is coming from in that they have to work with the resources they have, and while they are trying to get more, its all about money, unfortunately. This doesn't necessarily account for creative strategies, but then, I'm not a teacher and I don't want to demand they 'think more outside the box' as I'm not sure how I'd handle a class like this.

In the meantime I'm still reading more and more and right now am enjoying John Elder Robison's memoir, Look Me in the Eye, My Life with Asperger's. From the Prologue he says:

Sixty years ago, the Austrian psychiatrist Hans Asperger wrote about children who were smart, with above average vocabulary, but who exhibited a number of behaviours common to people with autism, such as pronounced deficiencies in social and communication skills....

Aspergers is not a disease. Its a way of being. There is no cure, nor is there a need for one. There is however, a need for knowledge and adaptation on the part of Aspergian kids and their families and friends.

I have read this part to my son, as he is now starting to wonder what it means to have Asperger's or anything else for that matter, questioning why he's different and helping him to realise that 'normal' is really a myth, everyone is slightly different, unique in their own way. Despite taking medication to calm down a bit and concentrate more, this is something he was born with, and I suspect, while most of us spend a great deal of time searching for our path in life, his path is already pronounced in that it might be difficult but it could also be a wonderful surprise gift.

Photo Friday

2008-05-09T13:57:00.001+01:00

Moving Along

2008-05-07T12:01:00.005+01:00

Wild Garlic in the village

I feel as if I've been neglecting this blog a bit, as I find I sometimes don't have much to say. I seem to have alot to write about on my other blog, mainly because its one point of focus. We are also fairly broke which means there haven't been many days out, at least none that cost money, so I have nothing to report on that. There's a Big Green weekend happening soon in Hebden Bridge and also our own little village will be hosting an international music festival (which dh has been designing the logo and posters for), so June should be a bit more exciting!

However, things are moving along with my son's aspie/asd diagnosis as the next appointment with a Paediatrician is in the works and he has just seen the psych for his medicine.

We have agreed to a trail run of medication for the hyperactivity portion, but not Ritalin, something similar but more mild as there was some concern that the ritalin would make his tics worse. I've had to acquiesce on the medication side as I really don't agree with it, and I've heard all the arguments about if he had cancer etc, we wouldn't refuse treatment, and this is a medical condition, and yet I see it as not life-threatening and not within the same realm as cancer treatment. The psychiatrist was of the opinion that it might not help at all, and the school has to make accomodations, they have to work with the child, and yet the whole ethos of schools is to fit the square pegs into round holes.

If the medication makes my little guy feel better then I will be happy. If it makes him feel worse or nothing at all, then I will stop it. In any case, we will have to wait about a month for it to start to work.

Photo Friday

2008-05-02T09:34:00.001+01:00

Driving Me Crazy..

2008-04-29T14:12:00.002+01:00

Like the seemingly millions of lego pieces scattered about, these little things have been taking over the house, getting under (painful) foot and generally creating daily nagging sessions for more and more.

These are crazy bones incase you didn't know, and the current obsession for my son, and many kids at his school. The good thing is that he has now moved on from collecting football cards, doctor who cards and magazines (although he still reads them), and can now actually engage in games with these little things. This helps alot in terms of social skills and he is getting better with waiting his turn, and following along in a game setting. My son has been trading them as well, and like the cards before them, he quickly developed the understanding of rare and hard to get ones. I'm still a little concerned though when he trades three for one in return, but since he always has a full bag and seems to be happy with his lot, then I guess there's no point in worrying too much about it.

Photo Friday

2008-04-25T09:51:00.000+01:00

Spiritual Compass

2008-04-21T13:20:00.011+01:00

Sometimes in my daily life I feel as if I've strayed away from my ideals, or perhaps have gotten weighed down in the mundane and need a refresher, a reminder of the bigger picture. For me the bigger picture is one viewed through my lens of my buddhist understanding and my desire to live a fruitful and peaceful life. This book by Satish Kumar (editor of Resurgence magazine) is a wonderful and gentle read (probably due to the fact he has been a monk), and while it poses tough questions it also provides some answers for that as well, through his eleven points of action.

The main idea of the book is about cultivating the 'three qualities of life' for which he uses the Indian Ayurvedic tradition to illustrate. Like buddhism, Ayurveda describes qualities of mind, three qualities, that influence our entire lives. Sattva, the highest, most desired quality, is about calmness, clarity and purity. The middle quality is Rajas which encompasses passion and energy, and then there's Tamas, which encompasses dullness and ignorance. One can view the entire world through these three gunas, from food (spicy being more rajasic), to housing (concrete ugly buildings being tamasic) to people-- most of whom encompass at least two if not all three qualities at some level. Seeing in this way, we can then seek to balance those qualities in ourselves and in our surroundings, aiming for a more sattvic (peaceful) existence, rather than a tamasic (poisonous) one.

One of the main issues is that of poverty, hunger and food. I often find myself wishing to go back to nature, or living more self-sustaining, and yet at the moment that is just not a possibility. For one thing, we live in a flat, with no garden, no place to grow enough to sustain us. All the nearby allotments are taken, and there is a waiting list.

This is a point raised very articulately in the book, that poverty is not a natural phenomenon. No other animal is denied food and water from the earth-- nor made to pay for it. Why have we done this to ourselves? No other animal claims ownership. Sure they probably all mark out some territory, but in the end, their needs are met by nature (unless we've put them into a zoo that is). If we wish to become self-sustaining, we still need to buy the land to do that, we can't just pack up and head for the hills, as they'd belong to someone, or the government perhaps.

Here in England there are so many small terraced homes without gardens, in fact the same in any urban area, so a great majority of people would be stuck without any means to feed themselves should the whole commercial structure collapse.

Satish talks about the point of return, meaning we all need to take a step back, to try and live simpler lives. I have many grateful days when I truly appreciate the things I do have. I am happy to have money to buy food and have a roof over my head. But when I think deeper about what life used to be like, I wonder whether we are really 'evolved' at all. Just looking at the bread sitting inside a plastic bag brought a strange realisation of the artificiality of our lives. I took this book out the library, but it is certainly the type of book I'd consider buying to keep to refer to again and again, for when pessimism (tamasic) takes over, or you lose sight of the bigger picture.

Photo Friday

2008-04-18T08:50:00.000+01:00

Hard Facts and Harder Decisions...

2008-04-17T09:49:00.004+01:00

Pervasive Developmental Disorder: according to Wikipedia (which provides a more lay person's language to understand it), PDD refers to a group of five disorders characterized by delays in the development of multiple basic functions including socialization and communication. The most commonly known PDD is (1) Autism, with the remaining identified as (2) Rett syndrome, (3) Childhood disintegrative disorder, (4) Asperger syndrome, and (5) Pervasive Developmental Disorder Not Otherwise Specified (or PDD-NOS).

This was the initial conclusion of my son's psychiatrist yesterday. He feels that my son has definite autistic tendencies (and actually sounded worse than I felt about it), and will need to be assessed/examined by a paedeatrician, a specialist in ASD's and possibly ed.psych again, within the next 6 months with the aim of a statement of special needs at the end of it all. In the meantime, the doctor felt that my son's hyperactivity was the most disruptive feature that could be addressed immediately, with medication of course.

I have never been inclined toward medication, unless I'm in absolute agony with no further options. However, my husband has the feeling that if it were something like cancer, we wouldn't turn down conventional medicine, if that meant helping my son. So I now have to weigh the pros and cons of medication for ADHD very carefully. I am more inclined to allow a trial period, but I do not want it to carry on into his teen years, nor do I want it to serve as a replacement for other possible treatments. That said though, the psychiatrist said his initial feeling is that my son's problems stem more from the autistic side, which could mean the medication wouldn't work anyway. I have to agree that this too was my intuition, before he even suggested medication.

So we are looking at another six months of testing, waiting, etc. but thankfully some of that time will include summer holidays. I can't say I feel much better after having heard the conclusions of the psychiatrist's observations, but something has ticked over in my brain. It is a bizarre thing, our brain, and how we can dupe it, or rather perhaps, persuade it to accept things like a placebo to do the work we want it to for instance. In my case, somehow hearing that my son had something more going on, something more complicated perhaps than Asperger's or ADHD, that I hadn't thought about, hadn't considered being as complex, brought me to yet another level of awareness.

I have found myself short tempered lately, easily frustrated by my son's behaviour and was beginning to think I may never feel anything other than this way. But I have been able to step back, and really think about the implications of having a neurological disorder. I can see how frustrated he is feeling, and when I let go of my own frustration, he relaxes, really relaxes, and that is so important. I can't excuse every bad behaviour and I have to be firm, but I can now also just relax, as he is just my son, as he has always been and always will be.

It also affects my daughter, as she is like a little Richter scale measuring everything that happens in the house. She is far more intuitive and aware than my son was at this age (2), but her language development is a bit slow, and I am conflicted as to whether to bring her in to see someone. It is developing for sure, and faster than my son's did, but will she have similar issues? Its a lot to deal with and my gut says to wait until she's 2 1/2 and then decide, as at that point she'll be able to attend the Steiner Kindergarten for two hours in the afternoon, and if it is obvious that she is having problems, then that will be the time to deal with it.

One part completed

2008-04-14T11:01:00.005+01:00

We have received what appears to be one part of the referral help that my son is expected to receive. This came in the form of Behaviour & Attendance Mainstream Programmes, which means my son will have a key worker helping him in school, at least I think so. We have the follow-up visit with the Psychiatrist this week, who has said that my son should definitely have a statement. I know this is good news as it means helping him in school, but I couldn't help feeling a twinge of despair as I read this letter.

I never thought that I'd have a child labelled with 'behavioural problems'. I find it distressing a bit, as most other parents would view this as a parental failure on our part, and probably an intelligence issue on my son's part. But this is not the case. In fact last week he received the head teacher's award for maths performance. This was so pleasing as my son has been saying that he can't do maths, when in fact, according to his teacher, he's quite skilled at it. I picked up How to help your autistic spectrum child by Jackie Brealy and Beverly Davies at the library this weekend, and have found it pretty helpful. I found I could especially relate to the statement "A lot of parents get stuck into the trap of trying to make thier child behave in a 'normal' way, rather than trying to understand what the problems are". I am working on that, on trying to function according to our internal compasses and seeing my son as the unique individual he is, without letting the outside judgements and labels get in the way.

I'd also like to thank Inspiration Alley for commenting about the issues we are facing, and I will be reading her blog alot this month, as it is Autism awareness month, and many folks are blogging each day this month about it. I'm not up to that task, but I am definitely interested in reading and learning more, and this in one of the situations where the internet is so helpful, so easy to share and learn from experiences, instead of having to muddle through alone.

Photo Friday

2008-04-11T08:56:00.001+01:00

Headmaster troubles...

2008-04-07T10:24:00.004+01:00

I was really angry this morning when I found out that last week my son was 'shouted at' in front of the entire year 6 class by the headmaster ( my son is in year 3). I learned of this through my friend's daughter who is in year 6 (ds doesn't tell us anything about school really). Apparently ds was being 'rude' during a science lesson and was put out of the class and taken to the headmaster who was in the year 6 class. My first thought was that kids tend to exaggerate a bit, so perhaps it wasn't as bad as it sounded. But my gut reaction activated mama bear! I feel that given my son's issues and his current process of being statemented, it was wrong to humiliate him in front of the oldest kids in the school. He should have been reprimanded in private, or if necessary then in is own class.

I'm planning to speak to his teacher after school today about it, as I should get an official version before storming in. My husband feels the exact opposite of me though. He thinks its probably necessary to 'snap him out of it' sometimes, when he is getting extremely obstinate--and he can be VERY obstinate and argumentative at times. Husband says the headmaster has to assert his authority and if he happened to be teaching year 6, then that's why my son was brought in there. I know nothing of the British teaching system, apparently.

That just leaves me not knowing what to think really. I just don't feel that since my son is already socially isolated, humiliating him in front of another class won't help that at all. I've also read that punitive discipline doesn't have the desired effect on kids with autistic issues. I don't even know what the 'rudeness' was so I have to find that out, and I don't want to let him get away with things either.

His teacher told me last week that the pyschiatrist definitely thinks he needs a statement, but she also told me rather disparingly that statements are 'extremely hard to get'. In the meantime she is asking for another behaviour support assistant. The thing is, I'm not sure how much (if very much at all..) the head and other teachers at the school know about autism spectrum disorders, including Asperger's. I certainly don't know much, and am finding my son more complex every day. Its not what I expected when he was born, that I would know him better than anyone else, and that I would just KNOW. I do have a strong intuition about certain things which I try to follow through on, but this whole process feels very daunting.

Should we homeschool him? would that be better? Can I cope with that? Again, when he was 2 and 3 we thought for sure home education was what we wanted to do. As he got older, and with my daughter's birth, it just seemed way too much. Yet, I want what's best for him, and if the social aspects of school get in the way, then maybe he needs to come home. I had mixed reactions to the homeschooling idea. Obviously it would help with one-to-one attention and eliminate bullying etc., but then he desperately wants to fit in, and if he stays in school will he eventually 'get it'? Perhaps with outside therapy of some sort to help with social skills, he might 'fit in' better, but sometimes (in fact, alot of the time) I can't help but ask if what he's 'fitting into' is very good at all...

Photo Friday

2008-04-04T09:29:00.002+01:00

World Autism Awareness Day

2008-04-02T14:15:00.005+01:00

The UN has declared today, the 2nd April 2008, World Autism Awareness Day which has now become meaningful to me as my son is on the autism spectrum with Asperger's syndrome. My own awareness has grown because of it, and for that I'm grateful. My husband as well, who also has some signs of Asperger's but was never diagnosed, has discovered a new awareness of himself through learning about and watching his son grow. Its a mutual path of growth. I still consider myself a newbie to all this though, and have so much to learn, grasp and understand. We are meeting with the child pyschiatrist in two weeks, to begin the process of statementing. He did say that more questions than answers have been raised after his visit to my son's school, so I'm wondering what that will entail. I have read a couple of wonderful books recently, Born On A Blue Day by Daniel Tammet, which is written by an absolutely amazing man about his own experience of living with Asperger's, and Finding Ben: A Mother's Journey Through the Maze of Asperger's by Barbara LaSalle, which did make me cry.

I'm Back...

2008-04-02T13:16:00.004+01:00

After three weeks of no internet service, we are at last back online. What an unbeliveably frustrating experience. Not so much living without the internet, which is hard at first, but like most addictions and habits, once you get past the initial withdrawal symptoms, its not so bad. Except that we didn't choose to live without it, we made the mistake of trying a new provider that couldn't provide. Talk Talk customer service has given us no end of headaches, and actually right now we are still with them, having finally received a replacement modem, but will be switching back to BT next week as another 18 months of unreliable customer service didn't sound appealing. Hopefully we won't have the same fiasco next week when the changeover happens!! Otherwise, that might just be the end of the Pennine Pen as I don't think we can handle any more frustration and it might all end up on the road outside.

Anyway, back in the virtual realm and there's loads of catching up to do. Many photo fridays have been missed, so I posted one here for last week. We also had Easter, and donkey's in the village and the Pace Egg Play, in the picture above. I love the traditions that still exist here, especially among the small villages.

The Pace Egg Play was originally an adult rebirth ceremony, welcoming in the spring and new season and might actually be the world's oldest drama, which can be traced back through English and European Mummers' plays to ancient Egypt and Syria. Its a strange mixture of a pagan rebirth ceremony with the later influences of Christianity and the Crusades. It's based around Saint George's (patron saint of England??) triumphs (like slaying the dragon), and throughout the play, three challengers try to defeat Saint George (Bold Slasher, Black Prince of Paradine and Hector). It is an all boys cast, due to the traditions of the play where local village boys would perform for coppers, or eggs, as it happens around Easter time. Our play is put on every year by the local high school players and two of the nearby villages of Heptonstall and Midgely also have the play performed.

I didn't know anything about the play or its history until moving here. It is fun to wander out of the house when you hear the shouting and music, calling villagers to the scene! And with no internet, we certainly have spent more time outside (sadly does it have to come to that to get us out???) and enjoying simple pleasures.

Photo Friday

2008-03-28T13:06:00.002Z

No Talk Talk Talk Talk

2008-03-24T14:04:00.004Z

Well I wish I could say that I've been on holiday, or that I've had a case of writers block or some other reasonable reason for not writing, but its been completely more frustrating than that. I have been without broadband since the 11th of March, the day we switched over to TalkTalk. Unlike the 20 minutes that the brochure says, we still haven't been connected. I'm writing from my mother in-laws. We received a faulty modem with our welcome package and its been downhill from there. We are now switching back to BT, and expensive, or at least, a unnessecarily frustrating mistake. The customer service we received from BT was above and beyond and I have to say I wish I'd have negotiated before just switching. Talk Talk have told lie after lie, with the first one being that they would courier a new modem to us, which we still haven't received yet. So there you have it, exiled from the internet due to my good intentions to save money!!! It may still be sometime before my next post, as we are still hoping for that elusive modem to arrive, as our switchback date is 11th of April. So dear readers, don't wander off, I will be back!!

Food Consumption Around the World

2008-03-10T15:44:00.031Z

I love when synchronicity presents itself in my life, and this week with my new found interest in saving money, and also adapting our diet to be gluten and dairy free, this post was sent to me from a friend in America.

The article originally appeared in Time Magazine and you can read it in full here. I found it very enlightening and as I was saying to my friend in relation to eating vegetarian, I'm not an evangelist, I think its more about being respectful about food, and not wasteful. So here's the post (the photos are the work of Peter Menzel Photography) which is what each spends in a week on food:

Italy: The Manzo family of Sicily.
Food expenditure for one week: 214.36 Euros or $260.11

Germany: The Melander family of Bargteheide.
Food expenditure for one week: 375.39 Euros or $500.07.

United States: The Revis family of North Carolina.
Food expenditure for one week $341.98.

Mexico: The Casales family of Cuernavaca.
Food expenditure for one week: 1,862.78 Mexican Pesos or $189.09.

Poland: The Sobczynscy family of Konstancin-Jeziorna.
Food expenditure for one week: 582.48 Zlotys or $151.27.

Egypt: The Ahmed family of Cairo.

Food expenditure for one week: 387.85 Egyptian Pounds or $68.53.

Ecuador: The Ayme family of Tingo.
Food expenditure for one week: $31.55.

Bhutan, Himalayas: The Namgay family of Shingkhey Village
Food expenditure for one week: 224.93 ngultrum or $5.03.

Chad, Africa: The Aboubakar family of Breidjing Camp.

Food expenditure for one week: 685 CFA Francs or $1.23

Because this was an American article, everything is converted to dollars, and unfortunately the UK was not represented. I suspect however, that the average UK family table would look very similar to the US one. Our own expenditure I would say falls somewhere between the Polish family and the Egyptian family in terms of food represented. We spend on average £60.00 per week not including any alcohol, which we try to keep in moderation and to the weekend, so that might come to an additional £15 pounds. Unfortunately I put away this weeks groceries before writing this, so I couldn't be asked to drag it all out and photo it!! I may do so next week just for fun.

I find it very shocking indeed to see how the expenditure pares down when you leave the more westernized countries, how the absolute basics are all that's available. And what's with all the soda in so many places??? I can't stand the stuff!!

Obsessed with Saving!

2008-03-09T10:51:00.003Z

Yes I seem to be getting obsessed with saving, which isn't a bad thing.. but perhaps its the influence of living in penny-pinching Yorkshire! I know many people who get a bit of a high off shopping, and I can't help but feel that most marketeers know this, and that's why the phrase 'retail therapy' was invented. Its not good therapy if it sends you spiralling into debt. Saving and bargain hunting also provides a similar high and as necessity is the mother of invention as they say, it has been more necessary lately for me to tighten the belt. I'm lowering some regular outgoings in hopes of balancing the need to move and pay a higher rent. If I can cut some costs, then those savings will be applied to the rent. Its a necessary evil.

Thus, I have now cut our phone/broadband monthly bill in half, by switching to TalkTalk. That's not an advert for them, but after checking on most of the leading ones available in my area, they were the cheapest and also held the best customer service ranking. In my endeavors I have found this site, MoneySavingExpert which is packed full of tips and well thought out advice. There's a section on where to look for freebies, some of which will be arriving in my post very soon. Also from this site I discovered TopCashBack which is free to join and you can earn discounts in the form of cash back when you shop through this site. I haven't used it yet, but plan to when I have to order my printer ink, as the company I use is on there. That was one pleasant surprise, there are lots of big name companies participating, so its not a time waster. ASDA and Tesco are on there, and there's a list of free things as well. Its all for the UK only though, sorry if you're reading from somewhere else. It pays to search about on the internet as we can all benefit from some savings!!

Photo Friday

2008-03-07T09:11:00.002Z

This is the week

2008-03-03T09:24:00.005Z

This is the week that the psychiatrist will be visiting my son's school to assess him and the school and I can't wait. I hope it will result in something getting done. Initially I thought the school was being helpful in trying to get my son assessed for an autistic spectrum disorder, but now it seems to me that really, they are not all that on top of things.

The past few weeks have been absolutely awful. My son has been tearful, angry, super belligerent and wanting to stay home most days. I've been faithfully told by friends daughters, (in his class and older ones) that my ds is constantly being picked on. This is causing his intense frustration as he desperately wants to fit in. Its also increasing his motor tics it seems, which is just placing him further apart from everyone else.

I found a recommendation for this book, Diet Intervention and Autism by Marilyn Le Breton, and have read through it this weekend. Its about implementing a gluten free and dairy free diet. This was hardly new to me as we were vegans for awhile, but never completely gluten free. I have noticed the difference in myself when I avoid eating bread, as my skin stays clear and I'm not bloated, sniffly and sluggish. I also find that when I do eat bread, I want to eat more and more. It makes perfect sense to me then, to extend the theories about food intolerences to behavior issues and autistic spectrum disorders. Even though I felt we were eating a healthy vegetarian diet, there's always more to learn and we still find ourselves in an food rut every now and again.

So this week, we are slowly changing our diet incorporating gluten-free bread for my son's lunches, as we can't just leave him without a sandwich, as that's all he'll eat - and gluten free pasta, another favourite dish. The dairy as well, will be replaced with soya. Like the author's son that's illustrated in the book, my son is addicted to yogurt and fromage frais. Its his morning breakfast ritual, his snacks, etc. So now its soy yogurt. We used to buy soy yogurt all the time, but then started with yogurt and fromage frais because it didn't seem to negatively effect him, and was cheaper-- considering how much he eats it! He's not much for cheese now, so that shouldn't be a problem.

I also realised that having switched brands of omega 3 supplements for him, the ASDA brand that I bought has aspartame in it, whereas Equazen did not. The book mentions aspartame as a trigger for allergies and I feel that it has been partly to blame for the horrible two weeks we've had, as that's how long he's been taking it. So no more of that ASDA brand, even though its considerably cheaper. I have been careful to avoid artificial sweeteners and colourings in the past, but somehow missed this one.

Photo Friday

2008-02-29T07:01:00.000Z