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Saturday, 2 February 2013

She aint heavy, she's my sister.

With only six months left on our Better Start funding I was keen to find a second speechie. The joys of living in a country town though means that we have to drive an hour to find one. Our current team (OT, Speechie, Allied Health Worker) work on pragmatics and social skills and is based an hour south of us.  We wanted one who would work on articulation and will be driving an hour north to see that one. I'm fussy, I want all facets covered. No stone unturned.

It was an interesting venture trying to find a new speechie. Thankfully the Better Start website gives a list of all registered service providers. Thankfully those service providers need to publish how much they charge for assessments and therapy sessions. I was absolutely appalled to see some SLPs charging more than twice the going rate; I can only assume that's because some think it's OK to over charge given it's technically not coming from our pocket.

Now, while it's practically a given that our big girl needs a speechie (mild conductive hearing loss, constant grommets), we've known for a while that our middle girl needs help too. Even as her parents there are times when we can't understand what she's saying; she has been diagnosed with a moderate to profound phonological delay. As teachers we know it's something we need to resolve before Prep next year as it will undoubtedly impact on her ability to link sounds to letters.

So with two Enhanced Primary Carer Plans plus our Better Start letter we packed a cut lunch and headed to the new speechie. At first I was dismayed at the aging and yellowing posters on the wall. There were resources on her shelves older than I am. Even my big girl was rolling her eyes at the boring activities of 'what is this person doing in the picture'. I could feel myself going to sleep. My middle girl had a better time of it. She was happy to show off to someone. It wasn't until the end that things got really interesting.

Our new speechie told me that she's not met a 'Down syndrome child' (I'll rant about her phrasing on another blog) who has been able to use pronouns and prepositions as well as our big girl. Two things crossed my mind - firstly 'Have you met many kids with DS then?' and secondly 'BOOYA!!' 6 years 7 months, 2 weeks and 2 days of intervention is paying off! It's always such a nice feeling when you get good feedback, though I'm not sure where her comparison is coming from. She also told us that our middle girl is certainly bright, though needing help otherwise her speech might 'stick' in the bad patterns.

What had me forcing back the tears though, was her reasoning for our middle girl's phonological delay. She put it mostly down to the modelling provided by her older sister. To think for a moment that the diagnosis of one child impacts so negatively on a sibling is hard to contemplate. Did we do something wrong as parents? Have we disadvantaged our middle girl by having her knowing her older sister wouldn't have a straight forward life? Did we not do enough to prevent any negative influence? Should we have been more proactive and done something sooner?

Do those in 'regular' families, those void of a diagnosis,  know that it's not just the child with the label who is impacted upon by said label? There are so many financial costs incurred, thanks to a diagnosis, by those who don't even have the diagnosis. Our middle girl's speech therapy is just one example. The emotional cost is not so easily measurable.

Life will be hard for our middle girl. One day she will realise her sister isn't like other sisters. I pray she isn't told this by peers at school speaking harshly of her sister. I've heard of that happening. I hope she is able to ask us before someone says the wrong thing. One day we might ask her, and our littlest girl, to help out in caring for their adult sister. How will this impose on their adult life? In the school yard I'm sure they will hear things said, particularly the 'R' word. I'm sure they will see things that illustrate why their big sister's life is not straight forward. I'm sure they will feel that it's all unfair, and feel 'why me?' from time to time.

I am also sure that they will grow up to be tolerant, compassionate and empathetic. After we drove home from Toowoomba our girls asked to watch Tin Tin (their father reads the graphic novels to them). Our middle girl got 'scared' in her delightful melodramatic way and it was her big sister who held her and comforted her. It was her big sister that led her off to their bedroom after the movie and initiated a game of 'rescue'. It is our big girl who sneaks into the fridge to poor her sister big glasses of milk after making her a sneaky chocolate spread sandwich. It is my big girl who is teaching her sister how to write her name.

Without a doubt our big girl is a blessing in our lives. She has brought reason and passion to my life. She makes her sisters laugh every day. She has more to give and more to teach us, and this by far out weighs any so called 'negative impact'.  My older brother used to tease me mercilessly and throw rotten fruit at me. He is also responsible for some of my happiest childhood memories and for helping me become the person I am. It's the joy of having siblings. My big girl didn't knowingly teach her little sister the wrong way to talk, but she does knowingly help her and love her. I'm making the choice to look at my middle girl's speech need as a part of her life long journey that will shape who she is - and so far she is one of the most incredible people I've had the pleasure of ever meeting. That is in part thanks to her older sister, and her diagnosis.


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