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Sunday, 10 April 2016

Autism and Siblings

As today is apparently Siblings Day, it's quite fitting that my flashback post covers the issue of siblings and autism. Siblings of children with special needs can often get overlooked as the child with the additional need tends to demand more attention... and meetings, and phone calls, and paperwork etc.

Photo taken on a lovely family holiday the year after Sasha's diagnosis. Tamsin can often make Sasha laugh and be happy even when we are struggling. They have an amazing bond.
The main reason I called my blog 'Steph's Two Girls' when I set it up was because I felt so strongly that I wasn't going to leave our eldest girl out anywhere along the way. It was never about just Sasha; it's about both of them and all our family (husband wasn't mentioned at that point because I assumed he wouldn't want to be!). We know that Tamsin needs support and understanding about her own feelings regarding her sister's needs, and she deserves extra attention to make up for all those times when our family life hasn't been able to follow the 'typical' lifestyle. In the post below I touch on how we discussed autism with Tamsin when she was just four years old. She's always known Sasha is different, and she is totally amazing in how she can relate to Sasha, help calm her when she's distressed and use all the relevant PDA strategies, which take a lot of extra effort. She is a star.

Sibs UK is a great UK charity which represents the needs of both child and adult siblings of disabled people. They say that siblings have a lifelong need for information, they often experience social and emotional isolation, and they have to cope with difficult situations. It's a sad fact that siblings of children with special needs are more likely to face bullying because of their brother or sister. The best we can do to counteract that is to try and educate others, meaning both parents and children.

My post below also looks at Sasha's language at the age of 2 and a half, and a quick mention of the assessment.

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At last we've received the letter from the paediatrician which sums up her report on Sasha following the initial assessment. It really documents all the answers I gave to the questions she asked, so no real surprises in there for us. We did discover that there was a format to the time she tried playing with Sasha - apparently this is called a Griffiths assessment, and it shows the paediatrician was observing her behaviour closely and monitoring what she could do during that time.

The following sentence was probably the only confusing bit - 'it is difficult to get an accurate assessment of Sasha's developmental skills due to her difficulties accessing the assessment.'
It goes on to say 'her skills do however appear to be age appropriate. Clearly her language is significantly delayed and she also presents with highly self-directed behaviours, difficulties with transition and poor social interaction'. So we're not really much the wiser, but I guess it does just put down in black and white what we already know.

The good news is that they have sent through a new appointment date which I've to call about on Monday - the bad news is that the day and time is already fixed, and I can't see lunchtime as being a great time to get much co-operation from Sasha if there needs to be more tests!

Ho Hum. At bedtime tonight I was thinking about Sasha's speech, and what is most noticeable is that she struggles with 'S' and 'T', which is a shame considering her sister is called Tamsin and her favourite toy Terry - if only we'd known! Tamsin was re-named by Sasha several weeks ago, to 'Gah-oo'. We've no idea why (although the difficulty with T must have something to do with it!), but it is at least obvious who she means when she calls that. They don't play together often, but have great fun and lots of giggles when they do as it usually involves chasing of some sort. We haven't gone into huge details with Tamsin but we have mentioned that Sasha is a little different, and we do ask for Tamsin's understanding in some situations. Often Tamsin is very good with her but there will always be times it doesn't seem fair. After a lovely swimming session, just me and Tamsin today, she blurted out as we got home that I cared more about Sasha than her. Now I'm sure this was said more as a throw away comment for a bit of attention, rather than because she really believes it, but it is of course still on my mind and I feel like I need to make extra sure we make lots of time and do lots of nice things with Tamsin. Swimming was fun today (apart from having to clear the pool due to floating poo!) and Tamsin did well with floating on her back. I'm keen to start her on lessons so she doesn't fall behind for her age, but she's still really just too tired from school. Summer term hopefully.

Anyway, back to Sasha's speech. Did I mention she can count to 10 (and to 7 in Spanish) and then from 10 backwards?! She was doing that in bed tonight, not sure why. Six is probably the clearest number, although it's 'ix', and seven is 'seben' - or is it 'eben', I'm not quite sure now I've thought about it! Must remember to take more video of her to capture things like this. She can tell me all of Dora's friends, although it's 'I-ha' rather than 'Isa', 'Boo' for 'Boots' and 'ico' rather than 'Tico'. Dora is quite a clear word though! A new phrase she has learned is 'my turn' and it's pleasing to see she seems to understand what that means (although just like any toddler she's none too keen on waiting for it :) ). Still heard nothing from speech therapy though, and have now reached the stage where I am keen to get on and do something to help Sasha communicate rather than sitting around waiting for appointments. Also need to speak to the hearing people again to fix a re-test and see if grommets are needed, oh what joy. More research to be done I feel.

At least our little girls are happy and healthy, and for that I'm very grateful.

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For more information on autism please do visit www.autism.org.uk and for more information on the specific type of autism Sasha has (Pathological Demand Avoidance, or PDA), please visit www.pdasociety.org.uk.

For Day 5 of our story please read: AAA Day Five

For Day 4 readAAA Day Four

For Day 3 readAAA Day Three

For Day 2 read: AAA Day Two

For Day 1 read: A is for April and Autism Awareness






Sons, Sand & Sauvignon

1 comment:

  1. My daughter is coming to an age when we would expect her to start noticing differences in her brother, we haven't really thought about how we would do this. Your blog has made me realise that we need to think of what to say before she starts asking questions.

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