Team Newman / Ferme

We took Lachlan to the Infant Development Team at the WCH yesterday to have him checked out, since he’s still not talking. Unfortunately, the speech therapist from the team has moved to a new position and the hospital, in their wisdom, have decided not to backfill the position. So we’ve waited four months for this appointment and it was essentially pointless. And they wonder why we no longer have any faith in the public system! The occupational therapist (who was the only doctor there) reviewed Lachlan and said that he was up to speed in some areas, but behind in others. She’s put us on a waiting list for some group therapy (speech) but we won’t find out if it’ll help until we get to see a speech therapist (and who knows when that’ll be). She said that he’ll need to be assessed to see if he has a language delay (which means he’ll meet his milestones in time) or a language disorder (where he’s picking up bits a pieces of language, but isn’t able to put it all together). Thankfully, we’re finding he’s making some progress at home, and if finally pointing to things and responding to things we say. One of his favourite ‘toys’ at the moment is a book of words. He loves pointing to pictures and having us name them, and he’s very good at pointing to the pictures we ask him to. He’s proved that his understanding of the language is much greater than we had thought.

We’ve got Dan on the waiting list to see the private speech therapist, so hopefully we’ll get in next term. She sounds really nice on the phone, and has given us lots of advice about things we can work on in the meantime. She uses a PECS system (Picture Exchange Communication System, I think) where the child has to use pictures to communicate. Obviously, we’ll start small, but we’re hoping Dan (and Lachlan) will take to it well. Recently, we’ve had very quick success in retraining Daniel in one particular area. A while ago, we were told to try and get Dan more involved and more communicative when he was doing his favourite activities – like reading a book. So we decided to imitate some of his toys and get him to touch us on the nose when he wanted us to continue reading. So we’d read a bit, stop and then wait for him to touch our nose before continuing. He took to it immediately and we’ve had lots of fun with it. The problems started when he started getting so excited about the game that he’d really whack us across the face. It was funny at first, but we knew we’d have to change the behaviour as soon as possible. So I’ve taught him to touch my hand instead and he pretty much figured it out straight away. Now if we can teach him to hand over a picture instead, we’re on our way. Finger’s crossed.

A couple of happy stories to finish off. Last week at playgroup Dan sat on a big kid swing by himself for the first time! He’s only used toddler swings up until now, but the preschool where the playgroup is held doesn’t have any, so he had to make do. He did very well and was very happy – until he had to get off, of course. Lachlan has also come up with a new game. When the credits for Pocoyo come up (a favourite TV show we have on disk) he pretends to be really upset. He starts to ‘cry’, screws up his face and stumbles over to me for a cuddle and some comfort. It’s really hilarious, because as he’s coming over to me he has to stop, unscrew his face and peek out to check if he’s going in the right direction and isn’t going to trip over something. Then when the next episode starts, he races back to the TV to be front an centre. Dan loves Pocoyo too, and tries to call out the names of the characters when they’re announced in the intro. Of course it’s just gibberish and squealing, but at least it’s an attempt at communicating and joining in.

It’s not very interesting (nor something that reflects particularly well on my parenting skills), but I’m proud to announce that we’ve finally given formula the flick. I’ve been meaning to attempt the move to cows milk for ages but with everything going on, it was just something I didn’t want to deal with. Then last week, we didn’t have any bottles prepared, so we had to give the boys cows milk before bed, and they barely noticed. Now we just have to get rid of the bottles…

We went to see the psychologist today and she has given us a diagnosis for Dan. She’s pretty clear that he’s autistic, though she admits that at this age the diagnosis is quite ‘unstable’. By saying it’s unstable, she means that  he’s still too young for it to be conclusive, and he should be reassessed annually until they can make a stable diagnosis. So he’s going to get a lot of therapy, and if the diagnosis disappears then all the better for everybody. Who cares if the original diagnosis was wrong, or if the early intervention worked?

There were some positives as well as some negatives to come out of this session today. Firstly, she doesn’t believe that Dan is intellectually disabled, which is fantastic. She’ll confirm this in the future when he might be able to do an IQ test. This is obviously good news, because an intellectual disability is a disability for life and is very difficult to work with, whereas autism is treatable to a certain extent – especially when intervention takes place early. Another positive is that we’ll be able to get much more support and services from the government, both financially and therapeutically.

The first negative which surprised us, was that his autism risk was much more severe than I had expected. I had thought that if he was considered autistic that it would be quite mild. However, my understanding of autism is quite limited. From what the psychologist said, there is a range of disorders which are covered under the autism umbrella. She was able to cross off two of these without question, and she didn’t think he had Asperger’s Syndrome either, because it usually doesn’t involve a language delay (children with Asperger’s can talk well, but often say inappropriate things.) What remained were called Autism Disorder and Pervasive Developmental Delay  – NOS (Not Otherwise Specified or Atypical Autism). She seemed to think he would fall somewhere in there.  I don’t know what that really means in terms of hope for the future, but she seemed to think that he could definitely be helped with therapy.

The second negative point was that autism is genetic and therefore hereditary, so Lachlan may suffer as well. She said that if they were identical twins that he would have a 90+% chance of having the same problem, but that because he was fraternal, it dropped to about 30%. So we’ve booked Lachlan in to get assessed in a few weeks. We know that he’s not as bad as Daniel, but going by the questions that the psychologist asked us, we are a beginning to suspect that he might have some issues too. We’re keen to get him assessed even if we’re just told that we don’t need to worry about him. And if he does have some problems, at least we can be fairly confident that he’ll respond to therapy.

I’m feeling a bit relieved, to be honest. At least we’re on a path now and not stumbling around in the dark. And everything we’re doing is giving Dan the best chance to have a normal life. It’s going to be expensive and difficult – especially with two – but at least we’re getting in early. I’m also slightly relieved that this is not a result of their prematurity. If it’s hereditary, then they’ve had it since they were conceived. Maybe the prematurity is even a bit of a blessing because if they had been born at term we wouldn’t have had such attention from all the doctors which has lead to such an early diagnosis (even if it is unstable). Having said that, both Richard and I are quite disappointed by the lack of assistance we’ve received from the public system. They’ve offered no assistance with therapy and no promise of a diagnosis. They’ve been seeing Daniel for over a year now, and they’ve got nothing, whereas this lady sees him for two hours and can come up with a diagnosis. The thing that really disappoints me is that the one chance that Daniel has to get over this is early intervention and therapy, and not a single person in the public system has pointed us in that direction. In fact, when they discovered that we were looking for private care, they were very discouraging. I understand that because there are government grants involved they’ve got to take care with over-diagnosing, but that’s not exactly in Daniel’s best interest.

So we’ll go on with the more doctors and more therapists, but hopefully it’ll work and in a few years we’ll be patting ourselves on the back as we send Daniel off for his first day of school. We will now be seeing one general practitioner, two paediatricians, two occupational therapists, two speech therapists, one physiotherapist and one psychologist. And that’s just for Dan. Now that Dan’s off oxygen, hopefully we’ll be able to look at culling some of the public doctors back.

The news is in and Dan is now one doctor down. He’s no longer on oxygen and will not have to see his respiratory doctor again unless something else comes up. The doctor was really pleased with his progress and was a bit surprised that the boys don’t have any real respiratory problems considering they were 29 weekers. All good!

I’m posting from a very tiny computer on the couch. It’s very difficult to type on the keyboard so it’ll be short. I had my foot operation last Thursday with no surprises or complications. I haven’t really had much pain but it’s been quite a bore not being able to get up and do anything. The boys visit me often and I still give them cuddles and read them stories, but I really miss putting them to bed and playing with them properly.

We took Dan and Lachlan to the paediatrician last week with no unexpected results. Nothing has changed really, but at least now Lachlan is in the system. We’re taking Dan to the respiratory doctor today to get the results of his sleep study (officially) but I’ll confess that we’ve already stopped the oxygen. Dan fights the nose prongs so much now that Richard has given up. Hopefully the doctor won’t be overly cautious and tell us we have to start again.

We got a call from the speech therapist we’ve been referred to and we’re now on her waiting list. She said she’d book something more definite after we have seen the psychologist and gotten her results. We’re seeing her next week and the week after.

There’s not much news on the progress front. Still no words but plenty of babbling. The boys are definitely playing off each other and will imitate each other all day. Lachlan is much more likely to copy us too which is good. They’re both clapping their hands in imitation and Lachlan is pretty much jumping now.  Richard bought a swing set just before I had my operation and we managed to get the toddler swing assembled. There were a few fights and tears over the swing, but now he’s rigged it so there are two swings and the boys are as happy as pigs in mud. Our new lawn is also growing very well after all the rain we’ve had recently.

More to come after the appointment today.