First the good news. Met up with Harri's ABA therapist and program co ordinator yesterday. It was clear looking at the initial program how much progress he has already made in four months. So we now commence a revised program with lots of cool stuff like early maths concepts and drawing. And continue to work on his capacity to attend to task and to work independently. Our therapist has commented several times that she has never met a child with ASD who is so dependent on others to provide direction and stimulation. Conversely I suppose it also lends itself to him being social as he seeks out human interaction rather than avoids it. At this stage he seems on track for attending mainstream kindy. Possibly without an aid.
The not so good news is. The isolation of living in Perth. The comparitively small population means there are fewer numbers of families with young ASD kids, and even fewer who live near by. I have plenty of contact with amazing mums in the US via the internet, and some interstate in Australia, but that is not much of a substitute for having others to meet up with from time to time. Parents with special needs kids tend to be busy people. There's the day to day business that all families deal with, then there's the extra demands of medical and therapy appointments. The challenges of managing other family events, children's extra curricular activities and so on. Even with all the best intentions it can be hard to muster the energy to reach out and make new contacts. Adding another layer of complexity to all this is the divergent paths many parents take in treatment models for their children. I'm not sure how long I could tolerate listening to another parent sing the praises of their child's homeopathic treatments, and other such woo. Some folk are open minded enough to accept that people choose different paths and that 's OK. I am not one of those people. I get frustrated with unscientific ways of approaching treatments. So sadly this reduces even further the potential for making supportive connections. So I suppose I am feeling a bit isolated from others walking the same path. Oh well. If this is the worst bad news I have at the moment then that's good news too I suppose.
The not so good news is. The isolation of living in Perth. The comparitively small population means there are fewer numbers of families with young ASD kids, and even fewer who live near by. I have plenty of contact with amazing mums in the US via the internet, and some interstate in Australia, but that is not much of a substitute for having others to meet up with from time to time. Parents with special needs kids tend to be busy people. There's the day to day business that all families deal with, then there's the extra demands of medical and therapy appointments. The challenges of managing other family events, children's extra curricular activities and so on. Even with all the best intentions it can be hard to muster the energy to reach out and make new contacts. Adding another layer of complexity to all this is the divergent paths many parents take in treatment models for their children. I'm not sure how long I could tolerate listening to another parent sing the praises of their child's homeopathic treatments, and other such woo. Some folk are open minded enough to accept that people choose different paths and that 's OK. I am not one of those people. I get frustrated with unscientific ways of approaching treatments. So sadly this reduces even further the potential for making supportive connections. So I suppose I am feeling a bit isolated from others walking the same path. Oh well. If this is the worst bad news I have at the moment then that's good news too I suppose.
That's very good news isn't it? Interesting too that he seems to seek out interaction.
ReplyDeleteI work just near the Autism Association and it's hard not to notice what seems to be a playgroup for younger children that's on there sometimes... maybe that kind of formal thing isn't wat you're talking about?
Lisa
You know I would be interested in something like that Lisa, but there's seems to be a fundamental lack of promotion of these things. I am continually frustrated by how it seems parents are left to seek these supports alone. Of course you get plenty of info about accessing funding, because this money goes to these organisations. But any extra support is either not available or you find it by pure luck.
ReplyDeleteHi. I like you plenty from over at TWOP, your comments so often make me smile. I have two kids roughly the same age as yours , and am sorry to hear about the hard time you're having. From JaneZ. Or just Jane really.
ReplyDeleteI guess this is a lesson in for me in never assuming.
ReplyDeleteI'm not 100% sure it's a playgroup but that's what it looks like, and it's definitely the Autism Assn.
I'm sorry you're having a hard time connecting. I went through a phase where I just felt sooo disconnected and wanted to meet some people who understood what I was going through... and now I have some really cool people I know, but I bite my tongue a lot. It feels cowardly, but as you can imagine sometimes it feels like you gotta pick your battles. It feels a little hallow sometimes, and I get sad.
ReplyDeleteMath, huh? Wylie has made a lot of progress in 6 months, but I think math is a little beyond him, haha. It's good stuff, the good news should outweigh the bad, but I'll try not to invalidate your frustration. Much love!
Thanks so much for your lovely thoughts SS.
ReplyDeleteLisa I'll look into the playgroup, thanks.
Hi ya Jane, the TWOP comments feeling is mutual. Always look forward to seeing yours.