Liverpool

I've been to Liverpool before, many years ago to see all the Beatles things, but I think I must have been on the train at the time because driving there last week was a magical mystery tour for sure. Sat Nav be damned, because it always seems to suggest the wrong direction, and following the directions from google maps also led us to a point, not the point we wanted, but a point nevertheless. So I ended up driving through a bus only area outside some shopping centre and am hoping that no fine appears through my letterbox.

We arrived at our destination an hour after we had planned, destination The World Museum. Once arrived, with kids wound up tight, and myself wound up even tighter, we headed straight for the cafe on the top floor. Bellies filled and some views of the city taken in, we descended the stairs as the elevator was forever in use.

Museum entry is free, and the planetarium show we took in was also free, and highly relaxing, my daughter fell asleep and I nearly did as well, among the stars. It was one of the things I wanted them to see since there are no planetariums nearby here. In the aquarium section there was a presentation and the kids got to touch a starfish and a crab- both alive.

Working our way backwards, or top to bottom, we entered the Eye for Colour exhibit which was filled with some fun exhibits like the Mood Room, where you just sit inside and observe how you feel as the walls & ceiling slowly change colours. I was surprised to find that pink made me feel energetic! Also my daughter built a rainbow and my son camoflaged himself. It was a great exhibit for autistic spectrum kids, with colour, texture, and lights!

My son liked the dinosaurs still, and both seemed pretty fascinated by all the intricate wax models of bugs and such. While walking back to our car an amphibeous vehicle with tourists passed by, and the kids were really excited and wanted to go on one, so maybe next time as there is so much more to explore in Liverpool.

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.

Its hard work

Today I was exhausted before I even left the house. The same morning routine of getting ready for school, the same for the past three years for my son is still not easy depending on the day. Depending on where the planets are aligned, what phase the moon is in, or where the tides are. For my daughter it is still pretty good. She wakes up most days eager to get dressed, have her breakfast, let the cat in or out, and go to nursery.

My son at 9 still struggles with the mundane tasks of life, tasks he says are boring or pointless. Most parents look forward to the increased independence of their children as they grow up, finding things getting somewhat easier. You taught them how to dress themselves, brush their teeth, have a bath, and at a certain age they do this on their own, and you no longer have to think about it. Having aspies however, I wonder when will we reach that point? Will we ever reach it? Things like brushing one's teeth, having a bath, still requires reminders, prompts and very often arguments ending up with me brushing my sons teeth or leaving the bath for another day. The entire personal hygiene routine is like this. And I love the admonishments that say don't do it for him, what you do for him he'll never do for himself. Yes, true, he won't. Ever. Left to his own devices I'm fairly confident my son's teeth would rot and then fall out, the bathtub would never know him and I dread to think what state his bowels would be in. Its not a case of something once learned, it is continual relearning . Even more difficult at times, baths at age 3 were more fun.

But as today wore on, and I worked in the school, and my son received a star pupil award, I'm reminded of the ways in which he is maturing, taking on new responsibilities at school, walking home with friends, using his mobile and remembering his watch. These are not things to be taken for granted.

And finishing this tiring day with my daughter asleep, my son laying next to me on the bed asking me about death and dying, worrying that I may die too soon. We talked about reincarnation, about our life together in the future, imagining me as an old woman of 80 and he in his middle age. What will that be like? Will he have children of his own? How many jobs will he work in his lifetime? Will I live close by to him? How lovely when all that tension releases and the love pours out. When at times like this I can still see my baby in my 9 year boy, and how we laugh at the loud snores coming out of my daughter, how I love them so.

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.

Back to the grind

Well I'm slacking off I see, but we seemed to have either loaded a virus, or these latest windows updates have completely screwed our computer up, as it didn't quite return to the factory settings, but instead wiped out all our personal files, that's all our documents, photos, music, etc. Norton's is not functioning properly either, and of course when we need it, we can't find the receipt and code that says we updated our subscription only months ago!! Its enough to make me not want to have a computer at all.. or to fruitlessly wish that I was a computer genius.

Anyway, its been back to school this week for my son, and I've managed to send in the Sendist Appeal. We are also one week away from our meeting with the multi-disciplinary team that have been assessing my son for an Autistic Spectrum Disorder (ASD). I was pleased to hear that the educational psychologist was in to see him this week at school, although I feel she didn't pick the best time as he is still 'fresh' from the holidays. It would have been much better had she come in the last month of school (in July) as she was originally intended to. I can only hope that she will have consulted with my son's teacher from last year who knows him very well, as this year's teacher doesn't of course.

Once the assessment is done, hopefully a diagnosis will result, and evidence that we can then present to the LEA for our appeal for a statuatory assessment.

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."

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.

Back to School, but happy.

It was a fairly quiet week last week while my son was at his grandma's. Since he's been back I have to say he's been doing very well. He seems happy and more calm and even offered to do some chores this weekend for me! Of course his motivation is money, to buy more crazy bones, but still, he was incredibly helpful. He had another visit with the psychiatrist yesterday, a follow-up really, checking on the medicine (atomoxetine- Strattera) that he's taking for the adhd. Not too much is happening with that just yet, as he hasn't been on it quite a month, but at least no side effects.

His calmness and cheerfulness I attribute to being off school and playing playstation 3 for a week. However I also know he is maturing and when we adjust our own behaviour and outlook (i.e. try and focus on positives rather than negatives), he responds in kind. He is truly a happy and gentle child and I really want to nurture that in him. I am planning to meet with his teacher this week about a special group forming for his class, for the slightly more advanced kids, and I am hoping that he will fall into this group as his maths and reading levels are so high.

One topic that has come up with his psychiatrist, and also his grandad suggested as well (grandad works with kids with behavioural difficulites), is that he is not being challenged intellectually and that leads him to being bored. Sometimes he is set a task that is difficult for him (like lots of handwriting), and left alone to it, whereas if given something more to his strengths and left alone to to it, he might not be as disruptive in class. This will all hopefully be addressed once the diagnoses is complete and hopefully the statement in place.

Hard Facts and Harder Decisions...

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.