My Perfectly Imperfect Boy

It's been a bit of a journey to get here but last week we finally got a diagnosis for Jacob.  Autism Spectrum Disorder.  And a mild intellectual disability (although we are more than a little dubious with that diagnosis given that Jacob didn't really have a good rapport with the psychologist and refused to cooperate with most of the things she did with him!)  And so the next stage begins...

It hasn't really come as much of a surprise to either Chris or I that Jacob has Autism.  He has always displayed traits that are typical of kids with Autism.  Things like being fearful of noisy, dark places (we took him to Scienceworks a couple of months ago and he did not cope very well in that environment!), liking things to be in a certain order and routines to be the same, preferring to play on his own and difficulties with social interactions, his obsessions with trains, his repetitive hand movements, his meltdowns over seemingly unimportant things (obviously important in his mind!), bowel problems and speech issues (he still calls himself 'Jacob' or 'he')

Looking back, I can see there were pointers to the Autism fairly early on.  He was always slightly behind peers in achieving his milestones (things like crawling, walking, etc).  He was not an overly 'affectionate' baby either and would not spontaneously give cuddles or kisses.  At the time, I thought this was just normal (it's hard to know with your first what is normal or not normal!) but since having Esme and Gideon who are very affectionate I know this it isn't and that Jacob was 'different'. 

I guess in my heart I knew there was something different with Jacob but in those early years I was happy to look past that and just believe that he was just a little slower to develop than his peers.  His eccentricities were the things we loved about him - things like being fascinated by and getting such excitement by the littlest things - a bug crawling along the ground or the wind blowing the leaves in the tree.  He loved going to Kinder and developed a really good relationship with his Kinder teacher.  She just seemed to 'get' him. 

Towards the end of his time at Kinder, I would watch Jacob with the other kids at Kinder and realise that he wasn't 'normal'.  While the other kids at Kinder had developed relationships with each other and would play together Jacob would prefer to play by himself and would not willingly interact with others (although he didn't seem bothered if someone came and played alongside him). 

He made the transition to school really well (helped by the school being in the same place and most of the same kids from Kinder going as well) and thrived on the 'rhythms' of the school day (he goes to a Steiner school so it is quite structured).  He's even made a special friend at school.  I talked to his teacher at the beginning of the year about my 'concerns' about Jacob and asked her to watch him and see what she thought.  By the end of the first term she said to me that she thought there were some issues.  She wanted us to get him assessed before he went into Class one (when the academic learning begins at Steiner - up to that point all the learning has been through play).

This was the lowest point for me emotionally.  Suddenly all my fears about Jacob were 'real'.  I guess I had been secretly hoping that I'd be told that I was just imagining things, that Jacob was perfectly 'normal'.  I didn't want to get Jacob assessed.  I didn't want him to be labelled in a certain way.  Jacob was just Jacob and we didn't need a label to tell us otherwise!  After lots of discussion with the teacher and friends who have children with disabilities I came to the realisation that labels are not necessarily a bad thing and that that can be useful in helping others to understand the child (and for getting funding to help them achieve things). 

And so we began the assessments.  Two paediatrician appointments, one psychologist appointment and four speech therapist appointments later we finally got our diagnosis.  Everyone seemed to agree with the diagnosis which I guess made the whole process smoother.

Now comes the hard part of deciding how we go about helping Jacob.  We have decided to go down the biomedical pathway for now (you can read more about this at the MINDD website).  This will involve a lot of changes to our lifestyle.  I'm feeling a little apprehensive about it all but excited to see what changes it will bring to Jacob (I've heard a lot of positive things from others who have gone down this pathway).  We will also continue with Speech Therapy for him.  He is doing really well with this and likes the Speech Therapist he sees. 

The hardest bit about all this assessments was being told that the things we loved about Jacob and the things that made him special were suddenly the very things that made him 'autistic'.  But Jacob has a very unique way of looking at the world and we're getting back to loving the way he looks at things.  It's beautiful to have someone who constantly teaches us to be amazed at the little things in life.  The other day when we were in the car travelling to school and the sun was flickering between the trees as we drove.  Jacob was in fits of laughter and told us that the 'sun was blinking at him'.  It's those types of things that make him so special. I think everyone who meets him senses this specialness about him too.

Sure, we have good times and bad times.  Days when it seems to be one meltdown after the other. Times when we perhaps cannot go to places we want to because Jacob is too fearful.  But we get there.  And we're learning to live life with our perfectly imperfect boy.