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.

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