Leaving it all behind

Today its goodbye to a troublesome school year. My daughter who is at the beginning of her educational journey learned to read, made friends and generally had a good year. My son, who has just finished junior school, did not fare so well. Its been a tumultous year starting with a new head teacher who gave him a one day exclusion the second week into September, clearly not understanding his behaviour patterns whatsoever. Teachers who are familiar with him understood his needed 'settling in time' which can take up to a month. And then with the school working to move out of special measures, two teacher changes in his class alone, and numerous supply teachers in and out, he has had a rough time of it. For one reason or another -but mostly due to behaviour he didn't go on any organised school trips at all this year. He did not move up the 'expected' levels in all areas, and his year end report for 'listening and speaking' made me snort out loud.

He scored 2 out of a possible 6. His teacher commented that "his progress has been hampered by the fact that he will not listen to adults when they are trying to explain new concepts or where he has gone wrong.... He would learn more and improve his performance if he listenened better and took on board advice given to him". I understand that my son does not like to admit he is ever wrong, and that will be a life lesson he will digest quietly on his own, but those and other comments throughout this year has made me question whether his teacher and head teacher have ever read even a summary of what Asperger's means.

Despite having a support worker who was there to improve things for my son, he languished this year and mirrored the attitude that seems to have been adopted by the school toward him, just ride it out he's leaving soon. The saving grace of this year has been the fantastic transition team from Sowerby high school where he will be going. Their specialist ASD provision has people who are experienced with ASD kids, and they have been nothing but positive when dealing with my son and have helped do a 360 degree turnabout in attitude toward going to high school. In one meeting with our school staff, they commented on the need for a positive approach (which seemed to be lacking) when dealing with kids like my son. He has had many visits to the school, worked with the learning mentor and has thoroughly enjoyed his transition day and is looking forward to September. The worst part of this year was seeing his confidence badgered and his self-esteem plummetting when as a year 6, he should've felt on top of the world (or at least the school).

I do not like to dwell on the negative though, and last week was a struggle preparing my son for the Leavers Ceremony today, and the school ceremony his class put on yesterday. He didn't want to attend either, saying I hate that place. I would have been willing to let him miss it, given my feelings about the year also, but I felt it was a ritual that needed to happen, a rite of passage in a way, and the end of one journey that needed proper closure. So with careful words and positive imput he managed to clear his head, give his speach, and did really well both days.

A parents collective organised an impromptu end of year party yesterday, as many of the boys in the class (son included) were excluded (behaviour) from what was supposed to be the class 6 year end trip last week. So this impromptu party saw nearly all the kids present, and all getting along so well, so happy, really celebrating. I saw many girls giving my son hugs, and he insisted on photos with many of the lads in class that he hasn't always gotten along with. That to me was how it should be, leaving on a high note, laughs and positivity. That is what I hope he will remember from this year, that he completed his journey fully and we are all glad that he made it.

Transitions

This week is the last one before school breaks up for the summer here. In fact they only have four days left. The last two days consist of two leavers ceremonies for my son to participate in, two of which he doesn't really want anything to do with. He's finishing year 6, which means, here in England, he will be going on to High School in September, so hard to believe! At 11 years old he hardly seems old enough for high school ( I started at age 14 in America) and yet, he is so ready to move on from a junior school that has not understood him at all, and has actually brought him down miserably this last year.

This past  Friday he had his transition day at high school, where he spent the whole day there with all the other year 6 kids who are going there, and he loved it. Sowerby Bridge High have been working closely with him at his current school, and that has been the saving grace of this entire school year really. Sowerby, the high school we have chosen for him, has a specialised ASD resource provision, which is small, only 6 students per year in it, but with staff who actually know SOMETHING about autism which will be a giant leap from what we've been dealing with. I will be writing more about that this week as school comes to an end.

Anyway, on Friday evening, two of his remaining bottom milk teeth came out, which seemed an appropriate display of the life lesson he was going through that day. Moving on, growing up, out with old and in with the new.

*the photo my son took of his favourite part of the High School!

A Tale of Two Schools..

As part of the early transition programme initiated by our LEA, we just finished visiting the two most likely high school choices for my son in 2011. Because he has Asperger's, its important that we choose the school with the best resources for him, things that include teaching, support staff, clubs, school layout, size, etc. Both of our nearest high schools are similar in student population but couldn't be more different in terms of building and resources.

Perhaps its because we went to visit Sowerby Bridge High first, that Calder High appeared so much like its shrunken withered cousin, because the building at Sowerby is nearly brand new. Prior to these visits, I hadn't given much thought to new vs. old buildings, except that I tend to like the architectural charm of Victorian buildings.

Sowerby felt light and open, a nice thing for a high school packed with so many students. The arts and textiles rooms were well stocked with all the tools of the trade, the learning resource centre (library) was well equipped as were most of the computer-laden classrooms. The cafeteria was also laid out well and lunch times are staggered so there's not a seagull- like descent of 1,000 students all at once. Sowerby also has a dedicated ASD provision, which makes it stand out in the valley as it is the only one.

Still, the provision only has space for 6 children, but those not selected for the provision (based on need) can still access it and find quiet spaces for study, help with navigating the school,  and all the additional help their statements would provide for. The downside for us is that there is no yellow school bus serving our area for Sowerby, so it would  mean independent travel on the main buses. Sowerby also had a lower Ofsted rating at the last inspection, but reading an updated letter indicates that massive improvement has taken place.

Calder High by contrast was built in he 1950's (no charming Victorian architecture there)  and for about 450 children. There are now 1,000+ students and we were told the council has indicated they must accept more this next year. Where are they going to put them?? The school itself is overcrowded and there's a maze of portacabins scattered throughout the site housing extra classrooms. The school hasn't been renovated so the ceilings, walls, and floors are worn and torn in many places. Some classrooms used to be cloakrooms, so have insufficient ventilation.

It was somewhat shocking really, and I wonder how many parents have actually been round the school? I wonder why also, in the middle of a fairly affluent valley, the council hasn't managed to upgrade the school? There is a great new "Ted Hughes Theatre" (because he was born in Mytholmroyd) at the front of the building putting on a modern mask for the aging school, and the cafeteria wasn't too bad either, but most of the classrooms we went into were crowded, stuffy and hot. They also don't have a staggered lunch time scheme, so it seems somewhat chaotic.

This is not to say that the quality of teaching is not superior, because the school does achieve some remarkable things. The Ofsted report was much better than Sowerby's and there are alot of opportunities for creative pursuits. They also have programmes in place to help ASD students, but they don't get the same funding that Sowerby gets.

Despite the well-worn facilities, there was a warm feeling (not just temperature!) about the school, a real sense of community. The downside is obvious, overcrowded and outdated, for a child with some sensory issues, I wonder how a dark, hot, crowded classroom will be tolerated? And yet all the kids we talked to had nothing but praise, and as we walked past the 'Remove' room, only one student was present. The Remove room is a narrow little thing where children who have been disruptive and given the requisite three warnings, go to sit out the remainder of that lesson. After that,  they go on to their next lesson with a clean slate. Perhaps the room would see more misbehavers later that day, but with only one student out of 1,000+  'removed' for disruption, well, that seems pretty good.

The yellow school bus also serves our area for Calder, making transport alot more straightforward.  I liked Sowerby's approach to homework compliance by having an abundance of afterschool homework clubs to encourage children to finish at school. But Calder's approach is different and they coordinate homework in sections, so for instance, kids might have two weeks history work to focus on and to complete in that time, while no other subjects will be assigning homework. For an Asperger's child who has a hard time getting organised and multi-tasking, focusing on one subject for an extended  period sounds just right.

So while I thought visiting both schools would clarify in my mind a definitive choice, I find myself weighing up the pros and cons of both schools equally. In the end it will be my son's choice and he already wants to go to Sowerby because a few of his friends go there now and a some from his class will as well, but he hasn't viewed the schools yet, which I would like him to do, as getting a feel for the places really helps.

How to make friends and influence four year olds

Yesterday was parents day at the school nursery and I was pleased to learn that my four year old daughter is doing very well academically, that her numeracy skills are particularly good for her age, phew! Her social skills however are still in need of refinement. For instance, she likes to herd all of her classmates, much like our australian shepherd that we owned in America, nipping their ankles, or rather, pinching their elbows if they don't comply. According to her teacher she has improved greatly since September, but she still likes everyone to adapt to her games, her needs etc, and really can't understand why they won't do it.

When the subject of asperger's was brought up to her teacher, her teacher felt it was more learned behaviour rather than an asd. I know girls are typically harder to diagnose, and often don't get an asperger's diagnosis, but i can see so many similar traits to my son in her that I know we may be in for some challenges. Her obsessions, the way she dictates rather than cooperates, the meltdowns, and certain other personal issues that scream autistic spectrum to me. Not everything though.

She has learned that her after school treat of sweets, or crisps, or grapes etc, will increase her popularity if she shares it around. It is great that she's learned to share and understands a bit about how friendship works. She has a group of reception kids that she regularly 'hangs out' with while we wait to pick up her brother. The worrying aspect for me is I have already noticed that the kids have come to expect something from her, and some days she just doesn't feel like sharing. Some days they take all of her sweets. I've already informed one girl that its polite to ask first and say thank you after. One of my friends has a ten year old daughter, not on the spectrum who also suffers similarly, in that she'll give everything away if it will please those around her, but often they just take it and run. I suppose thats a part of childhood. I can see the difference in my children, and perhaps in aspie girls versus aspie boys as my daughter is miles ahead of where my son was at this age socially, although she's still a bit behind her peers. She's no wallflower though, and has no trouble letting someone know when she's had enough, and that combined with a little sweet talking, will hopefully get her through and maybe a little easier than my son's school journey.

an asperger adventure

My son and I have both finished reading the book Blue Bottle Mystery: An Asperger Adventure by Kathy Hoopman which is the first book I believe we have both read, independently. Admittedly I had to encourage him to read it because all he really wants to read right now are Geronimo Stilton books. He can read at an adult level now but up till recently I did read aloud to him in additon to his own reading. We both finished this one in under an hour, its an easy and pleasant read for children (and adults!). What really jumped out at me was Hoopman's understanding of a boys life with asperger's, as the main character struggles at school in many of the same ways my son does.

 The story certainly echoed some of the problems we experience as a family like anxiety with change, and those who don't understand the problem. Sometimes I don't understand the problem! Ben, the main character's miscommunication with his teacher is very well written I think, highlighting how difficult it must be to have asperger's and try to connect with people. Despite Ben's best efforts to behave and please his teacher, he often gets it wrong, trying desperately to get it right he still gets punished. I know my own son has experienced this many times and how frustrating it must be to be accused of being naughty when you are just trying to work out one of a thousand possibilites in your mind, work out what comes instinctively to neuro-typical people. Its also a nice little adventure and Ben does have one good friend in the book, who helps him and seems to understand him. My son related very well to this as he also has one or two friends who do seem to 'get' him.

This is a simple book  that offers good insight into the life of an asperger boy and autism and I would love so very much if all of my son's classmates read it!!

Kathy Hoopman is a primary school teacher and mother of three in Queensland Australia. If she doesn't have any children on the spectrum, she certainly has a great grasp of it.

Aspergers

We finally have the diagnosis that we've come to expect in recent months. My son is on the autistic spectrum, and has met the criteria for Asperger's syndrome. Its not a suprise and now we've been told that the local ASD unit will come to the school to help with planning and support for him. We have already started the appeal for the statement but I've been told that it might not be necessary if this ASD unit provides additional support.

No More Meds, but more Paperwork

I'm starting on the appeal to the SENDIST tribunal regarding the LEA's failure to provide a statuatory assessment for my son. Phew, that was a mouthful! In fact that is how I am feeling about this entire thing, its so much paperwork- and energy that I'm convinced it really must be to discourage people from going up against them. If they can wear you out without giving you any help, then so much the better I guess.

Mid-September is when we have our meeting the multi-displinary team that have been assessing my son for ASD (an autistic spectrum disorder, possibly Asperger's) and once they make (or not, as the case may be) a diagnosis, that 'evidence' will be presented for the appeal. The fact is though, it could still be up to 6 months before any actual help is forthcoming for him in school, which means he'll be well into year 4. Considering that we are not located in a big metropolitan area, you'd think that they could sort this stuff out a lot quicker. In the meantime, my son has come off the medication. We stopped the Equasym (methalphenidate) as it seemed to be making him worse, high-strung, sleepless, aggressive, no appetite, etc. And it now feels like we have our son back.. he just wasn't himself on that med and it wasn't for him and I feel better about it.

But it doesn't end there, oh no.. my daughter has had a referral to a speech therapist and apparently she is delayed by 6 months. While I am now accepting of this fact, as I was aware that if one sibling has ASD, the other is more likely to as well, I never ever imagined that I'd have two children with some sort of learning/neurological impairment, but then as Joseph Campbell has said, "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us."

Has to be...

I've just finished this book edited by Linda Andron and have found the most enlightening chapter yet, of all that I've read. Chapter 5 'How to Speak Asperger's' by Fran Goldfarb with Guthrie Devine, spoke so directly to me and my son that I am convinced it must be Asperger's.

There were so many examples of her son's behaviour in this chapter and it echoed so much of my son. Particulary the paragraph in which she says that if something is true once, then for the child with AS it is true forever. This would explain why we've lost our special treats, as they seem to need to happen the same day every week, even though it was meant to be a 'special' treat, why Friday nights staying up later is sooooo important every single week, and generally, why things can get so confusing for my son, when everything changes.

I especially loved the paragraph where she discusses the trouble with social rules in a classroom or other group situations, where if her son, like mine, is interested in what is going on, he has trouble understanding that he isn't the only one that the teacher is speaking to and ends up shouting out answers like a conversation rather than a lesson. And he usually knows the answer, alot of the time before anyone has even taught it, and he's quite willing to tell everyone about it as well! This has all given me the dawning realisation that his 'inability' to sit still in class is not due to ADHD, but rather his own need to follow his interests, unfortunately to the detriment of the rest of the class.

What I need now is to learn to speak Asperger's myself, because although this chapter led to so many 'ah hah's' it is still very hard and frustrating at times, which makes it that much more frustrating for my son too.

The Drugs Don't Work..

When I was pregnant with my second child, I was told I have 'white coat syndrome'.. everytime I went to the hospital for a checkup, my blood pressure skyrocketed. Any other time, it was fine. Well its not that I'm afraid of doctors, its more the case of I don't particularly trust them. I've never been a big fan of prescription drugs either.

When I was about 12 I started experiencing severe migraine headaches, which I have now discovered are hereditary in my birth family, but since I was adopted, my mother had no idea. I was given medication to take every morning and told I'd need to take it for the rest of my life. I stopped taking it when I was 18 and moved out, changed my diet, worked on my health and the migraines stopped. I've never taken it since and haven't had any migraines either. At 24 I stopped taking the Pill (after about 3 years), because of all the nasty side effects. My period stopped for an entire year, and again, I was told the only way to regain a regular cycle was to go back on the Pill. I went to an acupuncturist instead and within 3 months was back to normal, and have been ever since.

Around that time I was also told I had poly cystic ovarian syndrome and most likely would never have kids. Thankfully I didn't believe this, even though I didn't want children at the time. Many years later when I went to see a fabulous specialist (yes I do know they exist) for my under-active thyroid he told me that I wasn't even examined properly for PCOS and should not have been told that. I have poly cystic ovaries, but that is different from PCOS. He also told me that my thyroid can be helped with medication, but it may not be necessary for the rest of my life. He was my hero! And thus, two years after that I had my first child.

Now I've had medication and can appreciate the miracles of modern medicine, hence my first emergency C-section... I would have been one of the died in childbirth back in the middle ages. But again, if I had solely gone on the advice of 'professionals' my second child would have been an elective section instead of the gorgeous home birth that she was. What's my rambling point??? Well my dear son has been prescribed Equasym XL, methylphenidate hydrocholride and I'm having a real problem with this. I'm having a problem with medicating my child with a controlled drug, that he doesn't even want to take.
The first med he was given, atomoxetine was a milder formulation and did seem to have some effect of calming him down, but he wouldn't take the three capsules required. By the second capsule, it was like fighting world war three. So this medicine can be sprinkled into his food, much easier, but much stronger as well. The first night he had a wild look in his eye, and literally seemed speeding off his face. Not good. We were told it could effect his sleep and his eating, and it has. He's having late nights, late mornings, craving sweets--as in more than normal and much more compulsively, and is he calmer? No-- he just seems, well, Speedy.

We are getting closer to a diagnosis, as he is seeing the last in the team of specialists this week. Asperger's is seeming like the most likely and if that is the case, medication for the sometime hyperactivity isn't probably going to work. It would seem his pacing about and getting out of his seat is more a case of processing information rather than not being able to concentrate and sit still. Its a fine distinction, but one that the psychiatrist has seen, and one that I can now see as well, but not one that the teachers can readily see.

So do we continue muddling through with drugs, hoping that perhaps it will help him to act 'more normal' or do we let it go? Has anyone else experienced similar issues with drugs? As in do other people on the ASD spectrum take meds for hyperactivity.. as I've read ADHD often goes hand in hand with ASD but I think the case for us is whether it really is ADHD and not more of a way of being-- if that makes any sense??? I understand my own need or lack of, for medication but I don't know how it really feels for my son, and his understanding and expression is limited so I don't feel he can really explain. I've also read the long term studies of ritalin drugs and the negative effects on children and that doesn't help the matter!

Disappointed but not surprised

We had a meeting yesterday with a different (not the same one from last November) consultant educational psychologist, just for the parents, and it went very well. She seems to be a very experienced and attuned specialist and next week she will be meeting with my son. The behavioural support worker for the school also gave us her report which she also had to present to the moderating committee for the statuatory statement process. I was very pleased with what she observed and recommended. She seemed to have a good measure of my son and his needs.

However, we've heard back from the council/moderating committee today saying that they have decided not to go ahead with an assessment for a statement of special needs for our son. This is disappointing as it means we will have to appeal, which is just alot more *bollocks* as my husband likes to say. I'm not surprised that one of their reasons was not enough 'evidence' as I said, we are still in the process of having a multi-disciplinary team meet with us and our son. It seems that either the special needs committee moves too slow (as in nothing happening with ed-pysch since November) or at the wrong time, as in push it forward like they did, without considering the processes currently ongoing. Something like the right hand doesn't know what the left hand is doing. Something like that..

A Letter = Action

In the quest to obtain a statement of special needs for my son, his teacher suggested I write yet another letter demanding that the council provide a statutory assessment. I thought we had already begun this process, but it has been taking a long time to get the educational psychologist into the school to observe my son. We first met with her and her team back in November with not much happening as a result. She did not meet my son, but instead had us fill out a questionnaire which determined he probably had ADHD.

Since then of course we were referred to a multi-disciplinary team including the psychiatrist who has made the most detailed assessment thus far, and doesn't really agree with the ADHD idea, but rather more like PDD or Asperger's. In any case, my letter last week to the head of the special needs assessment team, has resulted (we think) in my son's case going before the moderation panel this week. This astonished his teacher and made the school very happy, but after considering the matter, I'm a bit confused. The moderation panel apparently looks at all the 'evidence' and makes a decision as to whether a statement is necessary. However, all the 'evidence' has not yet been compiled, and this is the problem I'm seeing.

The ed psych woman has taken sick leave, ignoring numerous emails and not doing the cognitive assessment for my son. A different ed psych team has contacted me and we (parents) are meeting with them next week. The following week, after school breaks up, they are meeting with my son. So what the outcome of the moderating panel will be, I'm just not sure and I'm getting an ominous feeling that it is premature and will result in the need to appeal and perhaps start the process all over again... I hope I'm wrong, but it seems that when bureaucrats get involved, it just gets screwed up... like too many cooks in the kitchen. I am hoping that the schools report along with the psychiatrists report will be enough to convince them that a statement of special educational needs will benefit my son tremendously.

Enjoying the Silence

Yesterday my husband and I enjoyed our first Thai meal out in a very long time - at Rim Nam Thai in Hebden Bridge. We had our two year old daughter along, but even that seemed easy. My son has gone to stay at his grandma's for a record three nights, since he's off school this week. Its the first time he'll be away from us for that long, so we'll see how it goes, but I know last month when he went for a night and a day, it was strangely, but wonderfully silent in the house.

We were able to take our son out to dinner in restaurants when he was my daughter's age, and he did fine (in fact he ate alot more than he does now!), and to his credit he still does pretty well, he's not the same as when he's in school, i.e. he doesn't get up and run about and fidget and make loud noises. He does wind his sister up though, and complain about the food, loudly!

I'm currently reading Multicoloured Mayhem, Parenting the Many Shades of Adolescents and Children with Autism, Asperger Syndrome and AD/HD, by Jacqui Jackson and can't help but feel I've got it easy with only two children, and so far only one exhibiting autistic spectrum tendencies. Nevertheless, its never really easy and I notice now (even though I miss him terribly) how much more relaxed I am, the house is, its like when the electricity goes off, and all the hum ceases for a serene quietness. I've cleaned the bathroom and its still clean a day later!!!

I'm not saying that my daughter is completely quiet, she's taking full advantage of her terrible twos, but she is more relaxed as well, and naturally enjoys the sole attention. I worry that she's learning some of my son's (atypical) behaviour, which is definitely not what I want!!! I also never seem to shout when my son is away. I don't pride myself on shouting, and its one thing I thought I'd never do as a parent, but as many parents with challenging children will know, its not always that simple. There are many times when my son just pushes and pushes and shouts at me and at everyone else, and its really hard for me to take a few deep breathes! And I know that my daughter also sometimes unfairly ends up on the end of the firing line.

So why should it not be peaceful etc. while my son is at school for the day? It just doesn't feel the same for whatever reason, it seems the house is still buzzing when he leaves and if we've had a difficult morning especially. We woke up later than usual this morning, without having to have closed the bedroom door for the night (because usually DS is up at 6 am and banging about on his merry way). I understand the need for respite as many people have written about and I am now very grateful that grandma and grandad have taken the step of having thier grandson over for extended periods of time. He's different when he's there too of course, enjoying the attention that he doesn't have to share with his sister, and playing as many video games and watching as much Sky as he can stuff into each day!

**My camera is broken at the moment, so that photo is courtesy of yorkshirelife.co.uk, the canal outside the marina in Hebden Bridge, where we ate and watched the ducks and canal boats, to my daughter's delight.

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

"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...

More Help? More Paperwork!

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.

Moving Along

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.

One part completed

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.

Headmaster troubles...

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...

World Autism Awareness Day

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.

This is the week

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.

A much needed break

School has broken up for a week break and not a moment too soon really. My son had an especially hard last week and his behaviour in general is declining, like being more oppositional, irritable and he actually kicked one of the boys who had been bullying him and made him fall to the ground. While I'm glad that he has stood up for himself, I really don't want him going down that road. I don't believe fighting solves anything and ultimately will only get him into more trouble.

We had our first meeting the consultant psychiatrist last week which was really good. He is very laid back and easy to deal with, and immediately suggested Asperger's as a distinct possibility, along with tourettes. Such a difference to the ed psych people. He will be going into the school to observe and will also be meeting with us again on our own, and then with my son as well.

In the meantime a good long walk on a glorious spring-like day made such a difference. He was a different boy completely. Relaxed and happy. Nature is wonderful.