A New Stage Begins...

Well, maybe it's time to come back to the blogosphere.  It's been a while since we were here, and much has happened.  It may take a few posts to get us all up to date, so I'll just launch into the latest stage in Max's journey.

At the beginning of the year, aged 5, Max started school.  Up until about six months prior, we were still in two minds about whether we'd start school at five, or whether we'd wait a year and let him start at six.  In the end, though, we realised he needed the stimulus school would bring - socially and intellectually. He took to it very well indeed, and we knew it was the right call.  He enjoyed school, in all its aspects, and was left exhausted every day.

However, some things were not quite right.

In November 2011, we had Max assessed by the Children's Assessment Team at Flinders Medical Centre.  Basically, previous assessments (of which he's had several periodically over the years because of his prematurity) put up a few red flags with the therapists and they recommended we have a specialist assessment as they suspected all was not quite right.  This CAT assessement consisted of a number of tasks and checklists by a psychologist, a speech therapist and an occupational therapist.
This assessment concluded that while Max didn't quite "meet the criteria" for Asperger Syndrome, he was very close.  They suggested that we see how he went at school, and perhaps have a second, supplemental, assessment the following year if we felt things were getting more significant.

And they were, so we did. 

In conjunction with the school and Max's teacher, another evaluation (with an observation, more tasks and questioning) tookplace.  This time, it was clear that Max did "meet criteria", and was given a diagnosis of Asperger Syndrome.

It's always odd when someone else points out something that you've already been aware of in your child.  Sometimes you smile and feel proud, other times you're ready to fight against their opinions.  We knew Max has "issues".  We love the way he is himself all the time - funny, smart, quirky - but we recognise that he does have different behaviours to his peers. While we don't want the 'label', we are pleased that with this diagnosis we are able to get help for him.  We have already had contact from Autism SA and will now begin the regimen of therapies that we hope will give him some tools for his future.

As a side note, at the time of this second assessment, I picked up (quite deliberately!) Kathy Lette's new book The Boy Who Fell to Earth. It was both an eye-opener and a comfort. And so the next stage of our journey begins...

22 May

Today Max is 18 months old (or 14.5 months corrected). He's doing well - not walking or standing alone, no words (but LOTS of sounds), but happy and funny to be around. We've been told to treat him as a normal kid (as much as possible), so we hope to start Playgroup and swimming lessons next week (as soon as this month-long cold is over).

There's not a lot to blog about right now, so we won't be using this site anymore. Both Mark & I are on Facebook, so if you're someone we know, look us up there.

We wish all those who have premmies all the best in the world. If you're not already a member, join up to Austprem, where you'll find people who have experienced all we have, and more besides. Thanks to everyone who supported us throughout this long battle, and thanks for all your thoughts, prayers, gifts, calls, notes and comments.

Just to finish off, here are a pile of recent photos!

21 March

Max & I went to a Good Friday Brunch (thanks Shelley!). Had a great time catching up with lots of people we haven't seen in ages. Max got so tuckered out playing with everyone, he actually fell asleep lying on my leg! Never done that before. AND he actually stayed asleep despite being transferred to pram, then car seat! Bless.

18 March

Finally it looks like we're getting some more teeth! It has been a bit of a break between sessions, and so far, so good. Max also has his first cold - and is incredibly snotty, the poor wee thing. Strangely enough, we had some great nights, so maybe he was just extra-tired. Then came the massive, record-breaking heatwave here in Adelaide, and back came the bad nights. I think the heat did play a bit of a part, but the teeth were definately a factor for one or two nights, and the head cold for a few more. We will have to start working on this sleeping thing again now that the heat has passed (for a while?). We had another physio appointment - and this time he seems to have made some good progress. He was 'challenged' a bit with a new toy where he had to work out a bit of 'pressing buttons makes things happen' logic, and to our surprise, he actually managed to figure it out. He's crawling very well, managing the pulling-up onto furniture and getting back down pretty well, and is quite happy to push larger toys around the lounge - albeit a bit awkwardly as none of them are on wheels! Physio says that standing/walking could be a few months away yet - very hard to tell now. This past week was very busy - three 'first birthday' parties (Congratulations Kia, Jed & Mitchell!) over the weekend, and visits from Baba & Digo and Chocha Hush during the week. Max did very well overall, but, as always, much better when other people are around than when it's just him & me. I really want to get his room finished, and we have picked out a couple of bits of nice but basic furniture from Ikea, but my uni fees fell due, and so we put that project off for a while until the bank balance is a bit better. I'm hoping that I can sell the clothes and bits & pieces that have been donated for my 'Tiny Lives' Campaign this weekend at a local Easter car boot sale - some are larger bits of Max's (rocker, floor play mat, carry cot) and there are about six or seven tubs of clothes, so I really hope we can thin it right down and get some space back - and make some money at last! The latest Foundation newsletter shows one particular piece of equipment the NNU needs - a dedicated neonatal echo ultrasound probe. At the moment they have to use a probe built for a much larger child's body, and they can't press properly as it would hurt the baby. So, the readings aren't as accurate as they could be. A proper premmie probe costs around $17,850, and it's been on Flinders' wishlist for a while. I don't hold any hopes that we can raise that amount from a car boot sale, but maybe we can drop a little into the bucket. Max had several cardiac ultrasounds, and when his PDA was ligated, it was actually a lot larger than the surgeon was expecting. Maybe a more accurate screening would have enabled his doctors to have put him into surgery earlier, and helped his oxygenation at the same time.

16 March

BIG party weekend - Kia's First Birthday, Jed's First Birthday, Mitchell's First Birthday, Mama's (not first) Birthday. Just a couple of pics:

12 March

Max's 'due date' birthday. He's 12 months corrected today. To celebrate, he had a Milky Way bar - his only chocolate so far (and no more for a while, either!). He wasn't sure initially, but soon got into it.

11 March

Another little skill - this toy was given to him at Christmas, and up 'till now he hasn't been that interested - suddenly it's flavour of the month! It sings songs and talks when you push the various buttons, and Max loves pushing buttons. However, he prefers the on/off switch to all others, so we hear (in very quick, rapid succession) "Hello! I'm a..." "Bye, Bye!" "Hello! I'm a..." "Bye Bye!"...etc...