Team Newman / Ferme

I haven’t written in a while because I haven’t really known quite how I was feeling about Dan’s developmental delay. Some days I feel my usual optimistic self, but other days feel really down. One of the things I’m most upset about is that it’s now more difficult to applaud Daniel (and Lachlan)’s achievements without remembering that the milestones they’re reaching are milestones they should have reached up to 12 months ago. It makes them a bit bittersweet really. However, I can’t help myself. I’m so proud of them whenever they do something new.

They’re still not talking (that we understand) but we’re really pushing them on certain words, and they definitely understand us. For example, if Daniel is in another room and we call him, he may or may not respond. But if we say, “Daniel – biscuit” or “Daniel – cruskit”, he’ll be there in a flash. And if we ask him where Tiger is on his wall, he won’t point to him, but he’ll look  straight at him. So there is a response. Lachlan is also chatting more and will reach for the clock or light switch if asked.

At the moment, things seem to be turning in our favour a little bit. Last time I wrote we had just had the bad news about Daniel’s development and had sought a consult in the private domain to see what assistance we could get with that. I’ll list a few of the positives that we’ve had over the last couple of weeks.

1. Daniel is in the private occupational therapy already. They had a vacancy come up about six weeks earlier than expected, so we started a couple of weeks ago.
2. Daniel has done much better at the occupational therapy than we thought he would. Histrionics have been minimal and the therapist has had nothing but positive things to say about how well he is coping.
3. He’s to see the physiotherapist privately tomorrow.
4. We decided to look at getting the boys into a playgroup to help with their socialisation and development (hoping they’ll imitate other children, if they won’t imitate us). I thought the group nearest to our place had a waiting list, but when I called they had a couple of vacancies, so we went to our first playgroup last week.
5. Dan and Lachlan had a wonderful time for the first hour and a half at the playgroup, but Daniel cracked the sh!ts when it came to story time and sing-a-long. I think we’ll skip that for a while.
6. Daniel has also been referred to a private speech therapist at the WCH, and we should be able to see them in the next couple of weeks.
7. The respiratory people at the WCH have finally remembered we exist (after a couple of threatening phone calls from Richard) and Daniel will have another sleep study done in a couple of weeks. Fingers crossed that we get the result that we want, and Daniel no longer needs oxygen when he sleeps.

Finally, we saw the public paediatrician again today and were hoping to get a clearer picture about his diagnosis of Daniel and what treatment he was going to offer us. We weren’t going to tell him we had gone down the private path until we knew what we might be sacrificing if we no longer used the public services. He had the following to say…

• While Daniel is suffering from a developmental delay, he would classify it as moderate. In the long term, he believes that Daniel will be able to live a ‘normal’ life  – as in get a job, drive a car and have friends and all the things we take for granted. However, he may struggle at school and university might be a bit too much of a challenge. For us, this is very good news, as his happiness is all we’re after, and he’s more likely to be happy if he can fit in in the world. Having said that, the doctor admits that making such a long term prediction at this age is pretty dodgy, and anything could happen – but at least we don’t have to start making plans for special schools and a lifetime of support.
• He says that the Women’s and Children’s Hospital will probably only continue Daniel’s care (for his development) publicly until he’s two. After that, if deemed suitable, Dan would be referred to a government group unfortunately named Disabilities SA who would offer services in physiotherapy, occupational therapy and speech therapy. However, he also said that their resources are limited and that we could also pursue private care. He assured us that we would not lose access to the public services if we received private care, which was something I was very worried about. I don’t like lying and I’m not a duplicitous person, so it is a great relief to me that he fully supports what we’ve already done.

So, we’ll be seeing the Infant Development Team at the WCH on Thursday, probably for the last time, and we’ll find out if they’re going to refer Dan to Disablities SA, or discontinue his care. (I suspect the former.) And if Daniel is to come off oxygen, we may be able to finally say goodbye to the WCH. We have another appointment for Daniel with the paediatrician in late April (and we’ve got Lachlan booked in as well, so he can get checked out), so we’ll know then.

So in summary, the news isn’t all good and the problem hasn’t disappeared, but I’m feeling much more positive about what we’re doing and the direction we’re heading. At least we won’t be wishing we’d done more when we had the chance.