First Suspicions

It's hard to pinpoint now the first time we started to think something wasn't quite right.

I guess we were lucky in some ways as we had a nephew diagnosed with ASD who was a few years older than our son.  Lucky in that we had heard the term 'autism' before and had heard a little bit about it.  But unlucky in that each child with autism is so different and we initially decided that our son didn't share enough of the same characteristics with his cousin.

I remember vividly the first time I gathered the courage to speak to our child health nurse about my concerns.  The notes I made in his baby book say things like; "obsessive", "can't move anything in his room", "repetitive play", "tantrums when things change".  I also remember vividly the way she laughed me off, telling me I was paranoid and not to worry - "normal two year old behaviour."

I also remember the time I went for his two and a half year check-up, when my son still wasn't talking.  I remember the sympathy in her eyes when she told me the line I had already memorised - "every child develops in their own time".  And so they do.  Not long after that appointment where I watched my child clumsily build a tower or bricks - a skill we had been practising for weeks as I had pre-read the criteria for the "developmental test", my son did start talking, in full sentences - yep!  It took us a while to realise that a lot of what he was saying was repeated straight from his favourite video - the ones he would watch over and over again.  But at least he was talking - right?

By four - people sometimes still struggled to understand him.  He spoke quickly with a strange intonation, often with an American accent.  At daycare his teacher told us he was making up words, in fact they though he was inventing his own language - nope!  He was speaking Spanish, from the Dora videos he loved to watch.

Today, my son loves to talk!  To anyone - he would talk all day if you let him.  Mostly about Pokemon or the latest video game he is playing.  He likes to talk about categories.  Levels and abilities, everything is categorised and ordered, evolutions, interactions.  He stutters and has trouble planning his words especially when he is excited.  He often talks overly loud and will not realise when someone has stopped listening or is getting bored.  He often speaks over others as he simply doesn't realise anyone else was speaking, this drives his sister NUTS, but she is very good at pulling him into line and informing him that someone else was speaking and that he needs to wait his turn.  As much as I remember the day he started speaking - I also remember the first time he acknowledged when someone said "hello" to him when he walked in a room.  That is living with Aspergers - sometimes the most ordinary things bring you the most joy! 

Food, glorious food!

I really don't know why I was so excited by starting solids?  I barely contained myself until he reached 6 months, I was so eager to start pureeing and mixing random concoctions of vegetables for my food connoisseur. Now as a semi-seasoned mother I wonder why the rush to spend time boiling, mashing. mixing, feeding, freezing, heating, spooning, spitting, cleaning - and the poop - ugh!

 Unfortunately my little man did not share my enthusiasm for solid food.  For three months I tried different foods, flavours and combinations.  Trying to tempt him.  He would taste it and them happily push it all back out with his tongue.  We did this day after day.  We tried breastfeeding first, breastfeeding after - to no avail. Eventually I decided he wasn't ready.

At 12 months we tried something different - finger foods.  Finally success!  He was never a big eater and we went on to breastfeed until 2 years however at least he was eating something.  Mainly breads, some cereals and some fruit, potatoes and other bland and tasteless food.  Little was I to know how much a part of our diet  this bland food would become.

When we weaned at 2 years, the first ting I noticed was his dramatic loss in weight.  He went from chubby bubbly to lean and lanky.  To wean off breastmilk we substituted cows milk and he drank gallons of it.  It was also around this time we noticed quite a few of his 'autistic traits' started appearing - such as rocking, headbutting, running into things, little perception of space, not listening or tuning in.

One of the first things we did once he was diagnosed was to replace cows milk with soy!

 

Magic Milestones?

Those magic, magic milestones!  You know the ones you discuss at mothers group, or rather avoid discussing.  The ones the child heath nurse asks about at those well baby checks and of course the ones every family, friend or random woman in the grocery line seems to want to know about.  "Are they walking yet?" "My baby could sit at 4 months" "Oh by age 2 my child could speak fluent sentences in three languages" - you know the ones I'm talking about, right?

I, like many first time mums fell into the magic milestone trap.  At 4 months I sat around at mother group listening to all the other mothers talk about how their babies were rolling - back to front, front to back, left, right!  I sat and I told myself that it didn't matter, all babies reach milestones at different times.  By five months I was starting to worry - you see it wasn't so much that he wasn't rolling, it was that he didn't seem to want to. 

I, being the naive 'never been around kids much' mum thought that babies must need to learn how to do these things.  So I set about teaching my son how to roll.  I had nothing better to do with my day.  So for 10 minutes at a time I would lie with my son, rolling him from side to side. trying to coax him with toys to roll.  I would place him on his tummy and he would grunt at me until I picked him up.

I'll be honest with you now - my son never rolled, ever.  But I lied and said he did it once.  You see this series of pictures here - the proud sequence that everyone tries to capture?  Yep I admit it - I pushed him over.  

The closest we ever got was onto his side.  I never told anyone that, until we were fighting for a diagnosis at age 4.  I admitted to our OT after watching my neurotypical daughter not only teach herself to roll but crawl and walk and run, that I had literally taught our son everything in my own brand of physical therapy - never realising that most kids just do it themselves.

The Birth and those early daze!

My son was born 3 weeks early on the 23rd of December after being induced due to pre-eclampsia.  My labour was only 5 hrs long, but believe me time seemed to have frozen and distorted as I lived those 5 hours.  It was a mostly beautiful birth, without any pain relief but as with most births there were some drama.  My little 7lB boy got stuck on my hip and we pushed for almost two hours before my gorgeous midwives convinced the doctor to let me push in a different position.

When he was born we refused vitamin K and vaccinations as I was just entering the world of 'natural parenting' and didn't see the need in traumatising him any further.  He was beautiful and serene.  He slept for hours and hours, he rarely cried...and that's when things started to go pear shaped

By day three he was jaundiced, had lost a significant amount of his birth weight and had crystals in his urine.  Although he was breastfeeding every couple of hours he would often fall asleep at the breast.  So many people told me, "he'll feed when he's hungry" but my little man must have missed that lesson.  By day 4 he was being fed expressed milk and formula through a syringe.  By day 5 he was sometimes taking a bottle.  By day 7 I was expressing every hour while trying to feed him down a supply line and so sleep deprived I barely even remember those day.

By 14 days we had worked out a good rhythm, using a combination of shields and bottle feeding expressed breastmilk every hour and a half.  It took us until 9 months of age to finally be able to breastfeed without any shields but it was worth it!  We often wonder now if these were the first signs of signs of his autism; he still doesn't seem to feel hunger or thirst and he is very fussy about the texture of foods and the utensils he eats with.

He was what was termed a "high needs baby".  Which seemed to basically mean he liked to be held a lot.  He cruised around in a sling a lot and seemed to crave motion.  In a pram, in a sling, as long as he wasn't still.  In fact the only time he seemed to sit still was when there was static on the TV.  

But we never batted an eye at this, he was our first and we were 3 hours away from family and friends who may have wondered about these things. He was and still is our gorgeous, unique little man  

Telling our story

There have been a number of times over the past few years when I wished I had recorded information about our journey with Autism and I thought this year I would actually attempt it. So here goes...

We are a family of four. Our son, born in 2002 was diagnoised with Aspergers in 2008 after the birth of our second child in 2007 when inaddition to moving house and the wheels falling off our well oiled and routined wagon, we had some insight into what a 'normal' baby was like.

It certainly wasn't the first time we suspected something was different with our gorgeous little man and we had to fight hard to get the diagnoisis that provided us with not only the external support necessary to help him cope and thrive in this world but to help us understand him in his world.

My intentions with this blog is to detail our journey to diagnoisis and then to move on to the day to day things we discover, struggle with and overcome as we journey with Autism.