Thursday, August 27, 2009
The twins had a good day. Hannah was overwhelmed by all the other 'animals' but after a while she got on with it and even had a bit of fun. She also had her first afternoon at after school care - which was a big success! Yay!! Also met a wonderful young girl who was keen to help look after her each week. Yay!!!
Wednesday, August 26, 2009
Book Week Safari Parade
Tuesday, August 25, 2009
Turnabout
We have decided on a school for the brats for next year. They didn't knock our socks off buit they were realistic about how her inclusion of the class would work - what it might mean for her. They were interested in hearing suggestions from the EI team, are willing to develop an individual transition program for Hannah - including me putting together a social story on it all for her. They have an organised parent volunteer program, want to get info from Han's ST to assist with her communication and are open to using some sort of picture communication system for her in the class. They even considered some more mundane but very practical issues like toileting and her stability in getting around the grounds. So I still feel nervous but overall I really believe that this is the best chance we can give her from our range of options. The negatives haven't disappeared but at least I know what theya re - including her being one in 2 classes (often combined) of 58 kids.
It was DH's birthday on Sunday. We took the brats to a 50s fair that was lots of fun and then had a few friends over for a winters antipasti early dinner - which was great even if the weather was more summer than winter! DH seemed happy with his loot. He had been geeing hte twins up about it all for ages - Kit revealed that he and I had bought a gift - and it wasn't undies or pants - it was a shirt! but he wasn't going to reveal what was on the tshirt (thanks Kit!) so DH moved on to prying info out of little brat who to be fair - as soon as she heard the discussion with Kit said loudly 'Superman' and went to get the said tshirt out of my secret hiding spot! Big brat and I went shopping on Saturday for a few other goodies - and Kit was very impressed with the KIT cosmetics lotions and potions website so we got some of that too. The sales assistant was great - when she heard Kit she gave him some packaging goodies with 'his name' on it which he just loves.
Today I am planning to turn Grandpa's bedroom back into a music/sewing room and take the brats to their usual music and swimming lessons.
Monday, August 17, 2009
Friday, August 14, 2009
Peace
I feel satisfied with the school choice I (we are yet to 'decide' officially!) have made. We still have a final meeting at the school that was my preferred choice. The final decision for me rested on the process for enrolment - at one school we were welcomed instantly, at the other we met nothing but caution - at one school we left every meeting (and there weren't many) feeling GOOD, at the other we left feeling sick to our stomachs and anxious (and they wanted lots of 'checking us and Han out' opportunities) - so I think enough is enough. Hannah has a right to an education just like her brother's and if I could shout it or put it in ****ing NEON lights - yeah baby - I would!!!!!!!! The school where she goes is LUCKY. End of discussion - that is it. Nada. And so I feel peace - cos ultimately only one school gives me that vibe. The other - we still will go through the motions - they have certainly spent time angsting over Hannah - so we will go through the final interview - but boy - they'd have to knock our socks off and have a total attitudinal turnaround to get my vote. I should be sad and excited about sending my babies off to school but not sick with fear, worry and apprehension - and if it all falls apart - it shouldn't be because it was our fault - cos we 'pushed' Han into that school - it should remain about the best interests of our gorgeous daughter and I think that is how this school will approach our journey together. It is exciting and terrifying all at once - and already only 6 months away.
Wednesday, August 12, 2009
Explaining things
For about a year or more I guess I have consciously been taking opportunities to explain 'disability' and 'down syndrome' to Kit. I have been trying to let it happen naturally and so mentions used to be quite brief - like - the 'Buddy walk is for people with Down Syndrome and the people who love them to let everyone else know how special they are and raise money to help them. Hannah has DS and that is why we go.' and that was pretty much it for a long time. Then it got a bit more involved - probably when he started at preschool and stopped being involved in her EI class and so the focus shifted a bit to how it meant it sometimes took Hannah longer to do things or that it could be a bit harder for her to keep up - but always emphasising the positives and reassuring him that she can do everything everyone else can - just in her own time. I also occassionally named her (and his) friends who had DS - mentioning that they too had DS.
Lately as he gets more inquisitive (and especially since he has heard DH and I talking about schools for next year as well as the fact htat he understands he is now 2 grades ahead of Hannah at swimming) I have even ventured so far as to say it is Trisomy 21 cos of her 'chromosomes' - not going any further particularly but just to indicate it was the way she was born and it isn't a big deal. We have also started to discuss how other people can be a bit afraid of Han but it is only because they don't understand her and can be afraid of difference. Yesterday at the pool I thought I'd see what he said to this - I saw a young boy (8-10) with DS sitting very near the kiddy pool he and Han had been in - so I discretely (I promise!!) said - 'see that boy over there - he has DS' - just to gauge his reaction. 'I know' he said. 'How did you know?' I asked. 'Because of his face' he replied very matter of factly and so with a smile we got up and headed off to enjoy our bucket of hot chips.
I have also started to ask him to be more aware of Hannah's needs - for example we pay a lot of $ for very important speech therapy - he is there during the visit and sometimes he dominates so much that Han couldn't get a word in even if she wanted to - and so I upped the discussions a bit on how she really needed this sort of help and how the 'teachers' and therapists were really there to focus on Han - and while they liked him joining in and helping - it was really for Hannah. It's been a bit hit and miss - cos he is only 4 still after all! But it works sometimes and clearly he is also more aware of some of the implications of it all. I try to not overdo it - I don't want him to absorb my stress about how Hannah is accepted at school but I also can't pretend that he doesn't notice any of it either. I am lucky that he is very happy and sociable and makes good friends easily - I think that will help keep him from taking on more responsibility for Hannah that I want him to at this young age.
He has been making powerpoints for 'Hannah's talking' like the ones her ST does. He tells us what she did at school if she won't, he encourages her with praise and really does a lot of great helping. I am so proud of how he is with her. No wonder they have a beautiful relationship - I want to nurture it and not let it become burdensome for either of them.
Anyways today he started asking about it all again cos we were on our way to EI. I found myself trying to give an accurate but simple explanation of what an OT does. Then he started talking about the other kids there (who he knows too) - and one of his faves who he always loves to play with in particular. So he asks "Does B have a disability?" 'Yes' I replied - he has autism. 'What's autism?' he asks. Now how hard is that one to explain to a not yet 5 year old? This particular little boy is high functioning with good speech and pretty good social skills too especially if it involves running wild and interacting with Kit. Anyway I tried. I emphasised it as a good thing, 'no big deal' (sorry - I don't know how much affected families would agree with that one but I hope they understand my reasoning) and how he and this little boy were lovely friends. He is also starting to further understand what 'disability' means - when that little boy is resisting coming to EI his Mum and I both encourage him by telling him that Kit is there waiting to play - it often works. So I hope my explanation wasn't too whacky - I really have to practice explaining these things at a more sophisticated level without boring the pants off him with technical stuff. I thought siblings stuff wouldn't be useful for him until he was much older (maybe a teenager) - but I think I'll have to play that one by ear too and be prepared as they say!
He's such a great kid - and although I don't want him to grow up too soon - I think he'll be a fantastic man with loads of empathy and openness to other people's needs and their strengths. Quite a catch.
Lately as he gets more inquisitive (and especially since he has heard DH and I talking about schools for next year as well as the fact htat he understands he is now 2 grades ahead of Hannah at swimming) I have even ventured so far as to say it is Trisomy 21 cos of her 'chromosomes' - not going any further particularly but just to indicate it was the way she was born and it isn't a big deal. We have also started to discuss how other people can be a bit afraid of Han but it is only because they don't understand her and can be afraid of difference. Yesterday at the pool I thought I'd see what he said to this - I saw a young boy (8-10) with DS sitting very near the kiddy pool he and Han had been in - so I discretely (I promise!!) said - 'see that boy over there - he has DS' - just to gauge his reaction. 'I know' he said. 'How did you know?' I asked. 'Because of his face' he replied very matter of factly and so with a smile we got up and headed off to enjoy our bucket of hot chips.
I have also started to ask him to be more aware of Hannah's needs - for example we pay a lot of $ for very important speech therapy - he is there during the visit and sometimes he dominates so much that Han couldn't get a word in even if she wanted to - and so I upped the discussions a bit on how she really needed this sort of help and how the 'teachers' and therapists were really there to focus on Han - and while they liked him joining in and helping - it was really for Hannah. It's been a bit hit and miss - cos he is only 4 still after all! But it works sometimes and clearly he is also more aware of some of the implications of it all. I try to not overdo it - I don't want him to absorb my stress about how Hannah is accepted at school but I also can't pretend that he doesn't notice any of it either. I am lucky that he is very happy and sociable and makes good friends easily - I think that will help keep him from taking on more responsibility for Hannah that I want him to at this young age.
He has been making powerpoints for 'Hannah's talking' like the ones her ST does. He tells us what she did at school if she won't, he encourages her with praise and really does a lot of great helping. I am so proud of how he is with her. No wonder they have a beautiful relationship - I want to nurture it and not let it become burdensome for either of them.
Anyways today he started asking about it all again cos we were on our way to EI. I found myself trying to give an accurate but simple explanation of what an OT does. Then he started talking about the other kids there (who he knows too) - and one of his faves who he always loves to play with in particular. So he asks "Does B have a disability?" 'Yes' I replied - he has autism. 'What's autism?' he asks. Now how hard is that one to explain to a not yet 5 year old? This particular little boy is high functioning with good speech and pretty good social skills too especially if it involves running wild and interacting with Kit. Anyway I tried. I emphasised it as a good thing, 'no big deal' (sorry - I don't know how much affected families would agree with that one but I hope they understand my reasoning) and how he and this little boy were lovely friends. He is also starting to further understand what 'disability' means - when that little boy is resisting coming to EI his Mum and I both encourage him by telling him that Kit is there waiting to play - it often works. So I hope my explanation wasn't too whacky - I really have to practice explaining these things at a more sophisticated level without boring the pants off him with technical stuff. I thought siblings stuff wouldn't be useful for him until he was much older (maybe a teenager) - but I think I'll have to play that one by ear too and be prepared as they say!
He's such a great kid - and although I don't want him to grow up too soon - I think he'll be a fantastic man with loads of empathy and openness to other people's needs and their strengths. Quite a catch.
Monday, August 10, 2009
Book Week
Book week isn't far away - I have Hannah's dressup ready - she's going tobe a zebra - but poor old Kit?? He wants to be a gorilla ...hmm... I am not sure I can swing that one. FOr Han I have a lovely zebra print top plus some face paint - viola! Zebra. Oh - the theme is 'On Safari' and they are roaming down the main street of our suburb - it will be a sight to see I am sure.
Wednesday, August 05, 2009
T21 Travelling AFghan
Just when I was feeling a bit down about the whole school thing (again) ... this lovely gift for Hannah arrives from Robyn - it is one of CJ's afghans - it is so gorgeous and smells good too. Thanks Robyn and CJ.
Tug of War
Sharing the love with babies
Ok so her undies were on inside out and back to front and her trousers were back to front too but hey - she dressed herself - and was just so PROUD!
Tuesday, August 04, 2009
The bumpy Road
Well DH rang the 'school of choice' yesterday - we are anxious to hear how the enrolment process is going. After speaking with the principal he wasn't especially reassured - we have arranged a meeting - to discuss 'how to go forward' and what is in Han's 'best interests.' DH is getting pretty antsy - as he says - we rarely have a conversation where we come away feeling positive about things - so why are we persevering?
I don't know. I feel like I have been handing over Han for them to 'assess' like a bug under the microscope I thought that by observing her they might see what we see - Hannah's amazing resilience, her determination, her potential - and the reason why we want her in a mainstream class. I am not sure that is what is happening though - it feels as if she is a bug under the microscope and the face peering at her is scrunched up in distaste, fear and apprehension. I hate that that is what I have done to Hannah - that I have put her in that situation. She deserves so much more.
So where are we now on the bumpy road to school ... just bumping along through the long, stormy night I feel, wondering if we'll ever get there.
In other matters life is going pretty well. Hannah is really improving in her speech although much of what she says can be unclear cos she leaves of the beginning or end of her words - she is saying a number of words more clearly. She has had a nasty ear infection so unfortunately hasn't been able to go swimming which she loves - I'll let her go to lessons today and see how she goes.
We have been toying with the idea of a family holiday - somewhere a bit special but not outrageously expensive - we even toyed with New York for a while cos airfares are so cheap at the moment - but accomodation and other expenses quashed that idea. Also it will be the anniversary of Mum's death soon and I'd like to be in Brisbane with Dad as close to that date as I can. Maybe in January? Who knows...
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