Wednesday, June 16, 2010

How much is enough?

And will we ever have an answer to that?
Probably not.

Something that has been troubling me lately, and, it seems, some of my friends as well, is the question of therapy and how much is enough.
I have been asking myself lately whether or not I should be getting some private therapy for Ryley. As in, extra therapy, on top of what he is already getting through school.
I am yet to come up with the answer, and I have been pondering this for nearly 2 months.

I guess the concerns I have is that I will overload him. He already has a full day at school, where therapy is incorporated into the activites he does. I am a little in the dark about everything they are doing, and perhaps this is why I wonder whether I should be doing more. Should we be working on things at home so that there is consistency everywhere?
Are we perhaps already doing that?

One of the things I learnt very early on, was that I was the one who knew Ryley the best. And I was the one who knew when enough was enough. Therapists were good at encouraging me to push Ryley (particularly when he protested very strongly), but more times than not, I would stop the therapy session and say ENOUGH.
I wonder if this made me a difficult parent?
I actually preferred to have a home program written so that I could practice things with Ryley without someone else breathing down both of our necks. I was also able to incorporate therapy into playtime.
This meant that we went at our own pace.

In some ways, the thing that has helped us the most, has been our expectations of Ryley. We haven't stuck our heads in the sand, or set our expectations too high. We have always just accepted Ryley for who his is, not what his abilities may or may not dictate. It is easy to fall into the trap of focussing solely on what Ryley can't do, and put pressure on yourself to 'make it right'. And I can't say, that I am not guilty of doing that on occasion, because if I didn't, then I probably wouldn't have the motivation to continue to encourage his development. But there is a danger of setting yourself up to fail, because, no matter how much you encourage those muscles to move, they are always going to do it when they are ready. Right?

So.
Should I be doing more?
I don't know.

All children go through 'developmental spurts'. Often you will be teaching your child something then all of a sudden it will consolidate and they will learn it. This is normal with any child, regardless of ability. The difference with children with disabilities is, that often the process takes a lot longer, and you can feel very much like you are doing nothing.
Perhaps what we as parents need, is more encouragement.

Considering the costs of private therapy, I wonder if it will be worth it. Will that therapist have the expertise I need? Or will they tell me to do the same things they are doing at school, or that I am already doing? Guess if it's pay as you go, then I can see what happens hey? Not to mention the newly named 'chronic disease' money, which allows you a rebate on up to 5 visits to a speechie or physio (and others), provided they are medicare approved (sounds like hard work to me though!).

For us, the first step will be when I meet with his teacher next week and go through the IEP. It will give me a very good idea of what the focus is on at school, and I can then follow up a bit at home and decide whether we need to be doing more.
We now have a referral to the speech therapy team at the RCH (which is to follow up on a few things that have been requested by his school therapists). I can always ask them about their services.

At the end of the day, I don't want to be looking for a way to fix Ryley and suddenly make things right. But if there is something we could be doing to help eleviate the frustration Ryley is feeling about communication for example, then I should be doing it. Right?

So, maybe the answer is to keep seeking solutions, never ever give up, and to do what is best at the time.
But to keep having fun, and not get too caught up in 'therapising' my beautiful son.

Maybe I figured it out after all?
What do you think?

6 comments:

  1. Oh Anna.... everything you have written in this post is what has been going through my mind for the last few months, and still is. I too dont want to 'overload' Ellie, but at the same time, I question, "am I doing enough" I have now booked our first private physio session in a few weeks time, and am going to use my 5 rebateable visits for me to work out if this will benefit Ellie, or if It is just doing what I already know and do... I dont think I will ever know the answer to the question "How much is enough" I just know I want to do what is best for Ellie but as you said, at the same time keeping it fun... Loved this post!!!! xxx

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  2. I think that you and David know Ryley better then anyone else and I have every confidence that you will make the right decision about this. Ryley is lucky to have you two for parents.
    Ryley's nan.

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  3. Aaahhh - the unanswerable question..."Am I doing enough?". Can't help you there as I have NO IDEA how much is enough.

    It sound like you are doing a great job with Ryley though - something is obviously working.

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  4. I don't think I will ever have the answer. I got his school report on Friday and it has a bit of info in it about his therapy sessions. I am hoping to find out a lot more on Monday when I meet with his teacher to 'discuss'.

    @ Melissa- how hard was it organise the 5 sessions? Was there much paper work involved?

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  5. Anna we got a 5 visit thing from the GP (I forget the exact name of it), it funds $50 per visit for C's OT - so we have a $60 out of pocket gap (you can use it for physio, speech etc as well and can be a combo of different therapies). All we did was have an appointment with the practice nurse at our GP's office, it took half an hour for her to sort out the paperwork. Then each visit I take the receipt to Medicare and they give me the $ back. You can also get a GP Mental Health Care Plan, that can be used for Psychology, Psychiatry and OT. So if Riley needs OT defifintely get one of these as it funds 12 visits a year. The GP has to do that paperwork themselves as they have to establish that the disability effects the person psychologically. Going to a private OT has been THE BEST thing we have done, she is dealing with C's sensory issues and the changes have been awesome. It was proven last week when we stopped what we have been doing while C was sick, and he has regressed ;)

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  6. Thanks for that info Sammi! I think we are going to go down the road of getting the 5 visits for an OT. I hope C is ok again!

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