Thursday, 22 August 2013

Diversity in education, four very different children

One of the nice things about having four such different children is gaining a sense of perspective.  I often hear (or read) parents espousing one particular way of doing something as the best, or only, way.  As far as I can see, life is never that black and white - it is lived in the shades of grey in between.  I almost called this blog "parenting in shades of grey", but recently that would have taken on a whole new meaning . . .

At the start of August A (now 6) decided it was high time she learned to read.  She has known most of the letter names and their "typical" sounds for a while, but the task of putting that knowledge into practice seemed too hard (in her opinion).  A while ago I bought a set of synthetic phonics books (from the Book People) - Read Write Inc by Ruth Miskin.  A had been stuck on the first book of the first level, having shown a brief flare of interest when the parcel arrived, but not wanting to put any effort in.  Suddenly, on August 1st, she decided it was time . . . now here we are three weeks later and she has read twenty stories in level one, ten in level two, five in level three and the first of level four.

She learned the phonemes (sounds) by a lot of hard work, but the putting them together has come easily - once she was ready.  It would be really easy to extrapolate from this that - as a family - we use a synthetic phonics program and lots of practice.  But that's just how A has done it . . .

Go back ten years, to when L was learning, and you will find we did things differently.  Sort of.  We started with letter sounds workbooks, but nothing ever stuck, we tried phonics based reading books, but it was not working.  We tried "Peter and Jane" books - which use a whole word recognition system - but that got us nowhere.  We tried words stuck to things . . . that didn't work either.  I looked at reading schemes, phonics programmes, high frequency word lists, THRASS work, none of them seemed to have helped.  But in the end each of them did help - a little.  L is dyslexic, and he found matching the sounds to the letters hard work.  Some how - through years of picking away at it, he learned.  Each system added a tiny bit to his understanding, and eventually he managed to work it all out.  Now at 14 1/2 L likes to read national Geographic and Focus - he likes non-fiction, and cutting edge knowledge.

If we look at the next child - M - we see a different way of learning all together.  M likes routine, likes to know what is coming next, likes things that are linked.  We played games to get the sounds sorted - M picked up a lot of them listening to L doing things - really we just cemented what he suspected.  We read jolly phonics books, and did finger phonics activity books (that we had been given).  We worked through a "whole word" reading scheme from the 70's that my mother gave us (1 2 3 and Away.  The Village with Three Corners books), but it wasn't a quick thing.  Whereas A has picked up reading in a matter of weeks, M wasn't confident until early last year (9 1/2 ish).  He *could* read, but it was still sounding things out and slowly. M still prefers to be read to (now 11), but he is beginning to take books out with us to read if there is going to be waiting around, and reads silently and much more quickly.

Son number three - J - learned to read when no one was looking.  And then he hid the fact he could read.  When we started home edding I read a lot about how children would just effortlessly, magically, learn to read as long as you read to them and showed them you valued reading.  Our home is full of books and my husband and I read voraciously, we have always read to the children.  With the older two boys I had come to the conclusion that *maybe* some children just pick up reading, but not many! My small sample showed a lot of hard work was needed.  J wasn't interested in doing workbooks or worksheets.  He didn't like songs or rhymes.  I was struggling to work out a way in.  Then I realised he was reading instructions to games on the computer.  And reading his DS games.  And choosing TV programmes after checking the listings . . . but still he wouldn't read a book with me if I asked him to - we'd have wriggling, chair rocking, flopping on the table, but no actual reading.  I took a deep breath and backed off.  It was hard work to do that - the experience with the older two was so different, but I managed it.  I realised that each time I tidied his room I'd find a pile of books hidden under J's bed - a good sign I hoped.  I watched sneakily and yes, he was reading.  I don't know how, and I don't know when, but some time before he hit 7 J had learned to read.

So, what does this mean for other people?  Well . . . teaching reading has to be reflective of the child.  With L there were physical difficulties to overcome and that needed time, encouragement and hard work.  With M there was no magic fix - only sustained effort.  For J backing off was the right thing to do.  For A facilitating and having good materials on hand was right.  There is no one true way.  No magic effortless guaranteed path.  Watch your child, go with what works, and have fun :)

Wednesday, 14 August 2013

Reasons and random thoughts on diagnosing

I often get asked why we have sought a diagnosis for each of the boys, so in this post I'll explore our reasons.  But first . . .

A lot of people bridle at the thought of "labelling" a child, and their reactions to seeking a diagnosis are tied up in their idea of labelling.  I have an issue with this.  A BIG issue.

The idea seems to be that labelling a child (or person) is inherently bad, and part of that is the idea of a label.  We label things, and then look no further than the label.  To suggest doing that to a real live human being is wrong - BUT (and it's a big but, which is why it's in capitals) that is really not what is going on.  If a person looks at a diagnosis for a child and assumes they know all they need to then the person is in the wrong - not the diagnosis. 

With or without a diagnosis the difficulties, differences, uniqueness's that my children have will still be an inherent part of them.  If those things are unnamed, undefined, unacknowledged it will not make life any easier for the boys, but it may make it harder - for both the boys and those who help them.

A diagnosis is a starting point for leaders of clubs the children go to - it should make the leaders take extra care, extra time, have extra patience.  It doesn't always work like that, but having a diagnosis will let us pull the leaders up short, get them to look at their policies for SEN, and make allowances.

A diagnosis is also a direction to look in for me - it gives me a starting point for information, strategies, support.  It lets me network with other parents, to hear what worked for them, to feel less alone.

A diagnosis is also an explanation for the boys - it has helped L and M to have an idea of what is going on, to understand why they find certain things difficult, to get to grips with differences and challenges.

Eventually a diagnosis should allow us to access help for the boys.  Already L has had "special arrangements" for his exam - extra time and the use of a PC to record answers.

I also hope - perhaps in vain - that a diagnosis might help soothe extended-family tensions, and help them to be a bit more forgiving of my children's difficulties.

I often read that home educating families don't see a need to pursue a diagnosis, that they just bend around the child's differences and go with the flow.  For a long time that was how we did things, but eventually we needed to step beyond that.

With L the need for a diagnosis didn't come until he wanted to do an IGCSE.  We knew there were various accommodations that could be made for his difficulties but we needed an "official" diagnosis of dyslexia in order to access them.  It was pretty straight forward to arrange, we asked the school that he was sitting the exam at (as an external candidate), and they did the rest.  It was no surprise to any of us when the dyslexia was confirmed, but I think it was rather a relief!  Whilst we had "known" for a very long time, there was always a sneaking fear that we were wrong, now it was there in black and white. 

For M we felt the need to ask for help.  Purely and simply we felt out of our depth and that we had done as much as we could and now needed a more expert opinion.  A big driver of that was the fact that we could see lots of indicators for many different conditions, some of which required routine, others spontaneity. There were conflicts in how to deal with things and we just didn't know which way to jump.  At the moment we are still working our way through this process, but we are looking at a whole host of different disorders, so it's no wonder we were confused!

Lastly we come to J.  We had tried to get J assessed previously, but we didn't end up with a diagnosis, just a "not Autism".  The more I read, the more he grew, the more I disagreed with that.  J - as far as I can see - is classically Autistic, potentially trending towards savant syndrome.  I wanted "them" to look again.  So they are.

And that's why - for us - a diagnosis would be helpful, not to limit or pigeon hole the boys, but to help us, them, and the rest of the world understand their difficulties, and maybe even find a few ways to help.

Wednesday, 7 August 2013

Introducing Mr J

On to son number 3 - J. . .

J is nine now, and as far as we can see pretty classically Autistic.  Like M, J is going through the diagnosis process with Child and Adolescent Mental Health Services (CAMHs).

J was born by emergency C-section, at 40 weeks, and unlike a lot of mums out there I am convinced it was not only the right thing to do, but that it saved his life.  As soon as my waters broke I *knew* something was not right.  fifteen minutes after getting to the hospital they had agreed and the rest is history.

Only not quite.  During everything that went on J was - we think - deprived of oxygen for a period of time.  We lost the heart beat trace too, so his heart may have stopped.  Once he was born it was clear to the doctors something wasn't right.  It wasn't clear to me as I was unconscious ;).  I think my husband probably knew well before J was born - he was preparing to come in and be there when the C-section was done but plans rapidly changed from just a local anaesthetic to full GA and lots of people being paged.

J had hypoxic ischaemic encephalopathy, and probably as a result his brain was very swollen for about three days.  During that time he screamed, a lot, one single high pitched note until he needed to breathe, then he'd draw a huge shuddering breath and start again.  He was in the neo natal intensive care unit, and he looked so wrong next to all those tiny premature babies.  At 7 lb 9 oz he wasn't huge, but in that room he was a giant.  Within a day he was moved to a small side room - his screams were distressing the tiny babies.  He was on antibiotics, but otherwise just being monitored.  

I'd lost a lot of blood, and ended up needing a 4 unit transfusion, but the pair of us were home six days later. 

J developed pretty much as we'd expect, and apart from follow up appointments all was well.

From the time he could crawl J wanted to move.  I think he wanted his own space.  He didn't have preferred toys, I don't really remember him playing with anything at all.  Life at this stage is a bit of a blur - J's older brother M was having trouble and that occupied a lot of my attention, and  J was very self sufficient from very early on.  He learned "baby signs" quickly, but pointed a lot at what he wanted.

Somewhere along the line we realised he was different.  I don't know when, but I suspect it was a dawning realisation rather than a single moment of understanding.  I remember being at a home ed meet in the grounds of a stately home.  J was walking and kept going away from the group.  Everyone told me to let him wander, he wouldn't go too far, so one day I "tested" that.  J must have been about 18 months.  I asked the other mums to watch the bigger two and then watched J go off, out of sight.  Then I snuck up, hiding from him, and just watched.  He ran.  And ran.  And ran.  Not once did he look back.  He went for about fifteen minutes.  Not looking back, not talking to the people he passed, not stopping to look at things, just running.  Then he got to the edge of the grounds and went out onto the pavement, turned left and carried on.  That's when I stopped him, and decided we wouldn't be testing that theory again!

I can see now that J loves movement - now he's happiest on his bike, just cycling near home.  He also loves to be on his own.  When we go to groups he will chat to the adults, spend a little time with the children then need to go off on his own for a bit.  We have come to an understanding, and as long as he can find that space he doesn't go too far.  He tends to come back, periodically to say hi to me, chat to the other adults, then he may - or may not - go back to the other children.

We have other issues with J too - some are good, others not so much.

J is totally, brutally, honest.  Every now and then he will say something totally true, but utterly unsayable to someone.  Like the time he told his cousin her b**bs were too big because he bounced off them when he tried to hug her.  Or when he told his uncle to eat less and exercise more so he wouldn't die as young. There are many other times, but those show what I mean ;)  He also has no concept of someone being "a stranger" and will tell anyone anything.  Or, somedays, everyone gets told everything.  He has interests that he can talk about for hours, not noticing that the other person isn't interested.  He doesn't *get* non verbal cues, has no idea of personal space.  He can't do eye contact.

But there are good things too.  J's mind is quick - so quick it leaves me behind sometimes.  He is the proverbial sponge - absorbing information very easily, and remembering its meaning rather than repeating by rote.  Somehow he taught himself to read.  I don't actually know when, and I don't know how.  I was trying to teach him, he was resisting.  I stopped, and then a while later realised he was reading - instructions for games, websites over my shoulder, names of TV programmes, all sorts of stuff.  In a similar way he has taught himself to count in 2's, 3's, 4's, 5's, 6's, 8's, 9's, 10's, 16's, 100's, and probably a whole lot more.  He can do addition, subtraction, multiplication, division, fractions.  He can cook pretty well, he can read a map.  All self taught, when he was ready and willing he sorted it out himself.

We struggle with "formal" work, J finds writing hard, his concentration is poor if he hasn't chosen the task, so for the moment we are just letting him lead, and running to keep up.

When J was six I took him to the GP, because I was worried.  The GP dismissed all my worries with the statement "Well as he never sees other children how can he make friends."  Home ed was blamed for everything.  I was floored - it was the first time I had encountered that attitude, and I was woefully unprepared.  We left with a referral for a hearing test and that was it.

The Audiologist, however, was awesome.  She spotted J was not quite right when he needed her to be totally precise with her instructions, and when his hearing was fine we talked, and she referred us on to the community paediatrician.  He was OK, but not great.  We had a couple of appointments and ended up with an ADOS assessment (an Autism diagnostic tool)  Due to one sentence J was diagnosed as having problems but not Autism - and somehow that was all.  No actual help, a few book suggestions and discharged.

The point that "showed" J wasn't autistic was when he knew one action figure would be cross if the other stole her shoes.  About a year ago I was talking with J about an incident that had happened when he was unkind to his little sister.  I asked how she felt and J said "Angry".  I asked how he would feel if she did whatever it was to him and he pulled a face and waved his arms around in an angry way.  I asked if that meant he would be angry and he said "how am I meant to know? I just feel" and then did it again.  Further talking showed that whilst J knew certain actions resulted in certain feelings, he had no idea how those feelings actually felt.  And he had no names for his own feelings and emotional responses - there was a complete disconnect between the words and the feelings.

With that in mind we decided to revisit the idea of a diagnosis.  We asked our GP (a different doctor by now) just to refer us straight to CAMHs, which he did.

We saw a nurse at CAMHs - J and I first of all, and in that appointment she told me she could see "points of concern", and wondered about the "not-autism" diagnosis.  We filled in their forms, my husband and I went back for another appointment, and now we are waiting.  J will have the same group assessment that his older brother M had but this time we have had to wait 8 months so far.

I will add further posts about J's diagnosis process once something more happens.

Little Miss A

Last, but by no means least, we have A, our daughter, currently 6.

Lots of people ask if I kept having more babies because I wanted a girl.  The answer is no.  By the time we found out A was going to be a girl I was so used to boys I was terrified!  We coped though.

A, as far as we can tell, is neuro typical (NT) - that is to say she is developing within the expected range of normal, and always has done.

She is a very girly girl - ponies and princesses, pink and Barbie are all prominent themes in her play. 

She doesn't like rough-housing with the boys much, gets grumpy if she is bumped, and so far isn't physical in her play at all.

Sometimes I worry that with all the other issues in this house A will feel left out, but she likes to do things with me and somehow being the youngest, being the only girl, being the only NT one all seem to come together and work.

Saturday, 3 August 2013

The complexity of Mr M

Hello again :)

So, my first post was all about L, son number one - the trail blazer, and reason we home educated in the first place.  Now for son number two - M.

M is so different to L, they may as well be different species.  Where L is observant and slower to join in M races to jump into everything.  He is the proverbial bull in a china shop, both emotionally and physically.  M is now 11, staring down the barrel of puberty, on the rocky climb to independence, whilst at the same time clinging to the familiar comforting things of his younger days.

It's hard to list all of M's challenges, partly because we are still working our way through the (long) diagnosis process, partly because they overlap in so many places, and partly because he is just M to us and we bend around his issues reflexively - subconsciously - and don't always realise we are doing so.

For want of a better place to start, I'll start at the very beginning.  I'm told that's a very good place to start . . .

M was a much longed for child, the birth of his older brother at 29 weeks had caused a lot of pain and fear, there were miscarriages in between their births, the pregnancy had been filled with nausea and worry.  As it turned out M was by far my most "normal" birth. 

Things were different quite quickly though - and it is only now that I am realising that some of those differences are early indicators.  M took to nursing well - he was voracious and from day one was gaining weight.  That was probably helped by the fact his older brother was still nursing, so there was no real wait for my milk to come in.  The difference though was that M had no real concept of being full - he'd nurse endlessly, well past the point of being sated, then throw up.  Then, distressed, he'd want to nurse again.  He never managed to learn to "comfort nurse" - where the babe suckles without getting milk - and so just took far too much milk.  He was also very windy.  I spoke to the health visitor, who looked at his weight and declared all was fine.  I spoke to the doctor who had apparently read the same script, and told me I was worrying over nothing.  Then one day M threw up in front of the doctor, who asked if he did that often.  She was shocked at the sheer volume of milk he gave back. I pointed out I'd told her about it several times, she prescribed infacol and diagnosed colic.  Looking back I don't think it was colic, just M not realising when to stop - a common theme throughout his 11 years so far.  Eventually we worked out that a dummy would help, and it did.  Later I read that many children with ASD or ADHD are not nursed, often because their mothers found it impossible to make it work.  Is that what was going on?  I don't know, but it's an interesting thing to bear in mind.

As M grew other differences were becoming clear.  He didn't have a favourite toy or activity - he preferred to join in with what other people were doing - or rather, take it off them and do it himself.  He never did the lining up cars, or sorting things type of playing that is a classic sign of ASD, but he was very interested in collecting things from an early age. Certain clothes just wouldn't be worn.  And he was always asleep by 8 - no matter where we were or what we were doing.

When M was 2 his younger brother J was born.  I had to have an emergency C-section and spent almost a week in hospital, M couldn't spend much time visiting because he was so restless, wanted to fiddle with all the switches, wanted to explore.  When I came home he was clingy - much more so than before.  I think I overcompensated a bit too - I felt guilty for having all but disappeared for what must have seemed like a very long time to a two year old. 

Time marched on, as M approached three I found myself having *those* conversations with people.  If you have a child who is different, you'll know what I mean.  The conversations where you say "I'm worried about M because he does . . ." and the other person says something like "all children do that"  or "that's a boy thing" or "my son does that too" or "it's because you home educate".  I know these people meant well, but as M's mother I just *knew* something wasn't right.  Yes, lots of children might do whatever it was, but not to this extent, not this often, not this much. 

When he was four we spoke to our health visitor and had him referred to a speech therapist.  He was diagnosed as having a lateral lisp.  Possibly it had been caused by having a dummy (yay for mummy guilt!), or possibly it was part of the reason he couldn't comfort nurse.  We spent a few months going back for follow-up appointments, but in all honesty it just wasn't helping.  M tried, we did the "homework", but there wasn't any improvement.

By this point it was clear that M had issues.  He was always moving, he played alongside others rather than with them.  He recreated stories from cartoons rather than creating his own.  He collected things obsessively.  He needed his coat to be done up and the hood up if he was going out.  He wanted his shoes done up tightly to the point of leaving marks and bruises.  He found it easy to talk to other people but not to maintain friendships.  He got so angry.

Then we moved - a long way from family and existing friends, a whole new start.

M made friends quickly at groups we went to, but they found him "too much".  He has no concept of personal space, doesn't get non-verbal communication, doesn't see when he has pushed people too far. 

That caused problems - as a family we have all lost friends who cannot see past M (and J's) issues.  In some ways that's fine - genuine friends can hopefully be understanding, and NT (neuro typical, ie normal) children can be led by example by parents.  On the other hand it has affected the other children, and me.

About a year ago we started recognising a lot of obsessive traits - looking back they were always there, but now they are growing in prominence - at the same time I was aware that M has a lot of Autistic traits.  From reading about both of those I found a huge conflict in how to approach dealing with them.  OCD needs to be dealt with by introducing flexibility and deconstructing routines and rituals, whereas ASD children find comfort in predictability and routine.  We talked about it, but neither my husband or I could work out how to do both.  So we looked for outside help to try and define what was going on and how best to go about helping M.

Initially we spoke to our LA contact.  I wanted to know if she could help, or refer us directly.  The answer was no, which I had suspected it would be.  So we went to our GP.

The GP was a bit rubbish.  He asked to see M, and basically quizzed him about what he knew.  I'm still not sure if that was a reaction to the fact that we are home edding, or a way to assess M's social interaction.  I left the appointment frustrated, but with the referral I wanted - to the community paediatrician.

We saw the Paediatrician about 6 weeks later.  It was a more-or-less pointless appointment, he asked what our concerns were, chatted to M, and then referred us on to Child and Adolescent Mental Health services (CAMHs). 

Our first appointment with CAMHs began badly but got better.  They were running late, which didn't help M to relax, and when we got to home education I could tell they were concerned about social interaction.  Then the fire alarm went off, and we had a very informal 15 mins or so, during which M went on at length about all the clubs he goes to and the home ed stuff we do.  When we got back inside the atmosphere was different, and home ed was no longer even being discussed.

Then my  husband and I went back for another appointment without M, so we could discuss him without upsetting him.  Along side this we had a small forests worth of forms to fill in detailing all the way back to birth how M had played and interacted.  A lot of the questions were hard to remember details of, but we got through it in the end.

About 3 months later M went for five hour-and-a-bit assessment sessions.  There was a small group of children and a very high number of adult observers / helpers.  They put the kids through various games and activities, and made lots of observations.  It seems to have been really helpful, and the report about it does list most of the issues we see in M.  CAMHs viewed this as almost a replacement for school-based observations, though they also said we could get people from the various clubs to fill in observation forms if needed.

Now we are waiting again - this time for the neuro-development team.  It's been about 10 months since the first appointment with the paediatrician, and it is a frustratingly long process, but I feel like we are making progress.

We don't have a diagnosis yet, but we are looking in the direction of Autism, ADHD, OCD and sensory issues.

I'll do more posts as we go through the process further, but also looking at each specific set of expressions and how we work around them - but for now I think this post is long enough!

Introducing Mr L

We’re an interesting family.  Well, by interesting I mean odd, confusing, complex.  And by family I guess I mean tribe – at least by some people’s standards! 

A while ago I heard the term “rainbow family” and that descries us pretty well.

We have four children, but for now I’ll just tell you about one . . .

 L - the eldest - is now 14, he went to a pre-school nursery for about 8 months, but it just didn’t work.  He learns by discussing, by picking apart an idea to see how and why it works.  We have conversations that start off about aliens and end up about microbiology.  At nursery they just couldn’t deal with that.  They didn’t understand L, and had no intention of trying to.
When we took L out of nursery he hated the idea of reading.  He’d been told he was “too young” to do some worksheets and that thought stuck with him.  We went gently, but after a while it was clear that he just didn’t get phonics – we could spend a morning playing games and looking at things that started with “a”, and then the next day he wouldn’t remember the sound of the letter at all. 
“Oh well” we thought, he was four.  We had plenty of time.  By six he still didn’t get reading.  We’d tried “look and say” – which is a whole word approach, he managed to learn the words “my name is L” but that took us about six months.  Phonics was no good at all, we had 15 sounds matched to letters, but as soon as he mastered a new one he forgot an old one.  I tried songs, TV programs, computer games, just backing off for months on end.  The pressure from the outside world was growing.  I felt like I was failing.
For years I had been reading how if you show a child you value reading they will want to learn to read.  How all you had to do was read to a child and they’d pick it up.  How all you had to do was have books available.  D and I are both avid readers.  Our home is, and always has been, full of books.  We read to the children every night, and most days too.  Those things just weren’t helping
Somewhere around six and a half I realised that L was reversing letters.  He’d copy stuff but switch the order of letters, or write them backwards.  My sister is dyslexic, as is one niece (other sisters daughter).  I wondered if L was.  In any case two things were clear – he just wasn’t getting reading, and he learned best by talking.  So that’s what we did – talk.  A lot.  About everything.
At some point around 9 L learned to read.  I am still not really sure how – or what made him suddenly be able to learn.  We didn’t do anything differently – mostly because we’d already tried everything I could think of!  He got a DS, and wanted to read the story part of a Pokemon game.  He had motivation, but there had been times when he was very motivated before this.  Something clicked, and We were so relieved that it had.

And now here we are – he is 14.5, taller than his dad (and me!), and he reads.  Somehow I had begun to doubt I would ever be able to say that.  He still doesn’t like to read fiction – unless it is background or rules for role-playing or war games – but he gets Focus magazine (the BBC topical science magazine, aimed at adults), and reads each issue.  He can read quickly enough for day-to-day tasks, he reads quite accurately too.
Earlier this year L decided he would like to take an IGCSE.  As part of that he was formally assessed for dyslexia.  He is dyslexic – profoundly so – and was allowed to use a word processor to answer the questions.  The spell check had to be disabled, much to his dismay!  He also got 25% extra time.  I have no idea of his results yet, but he managed a 2 ½ hour exam, then a 1 ¼ hour one.  That on its own is a huge achievement.  As part of the dyslexia assessment the assessor did a verbal and nonverbal reasoning test, which L excelled on.   I say this not to brag, but to show you that all that talking has helped J We separated learning and reading, believing (hoping) that the reading would eventually catch up.  It certainly seems to have.
The assessment was through the private school that L was sitting his exam at – and according to them most private schools offer the same service.  It cost us £100, and was recognised by the exam board as proof of extra needs.
We also hunted around and found an optician that could do an Irlens test – this is a test to see if different coloured transparent sheets can help the individual.  L found that grey sheets helped, and it improved his accuracy by 20 % and his speed by 45%.  The testing was done as part of an NHS sight test and so was free, and the sheets were £6 each.
More importantly though, L now understands why reading is so difficult for him, and that he can still achieve in spite of that.  Knowing why has freed him from feeling stupid.  That would have been worth the money on its own.