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!

No comments:

Post a Comment