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.

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.

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!

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...

Reminising

As I toy with the idea of another baby I ahve found myself drawn to the tonnes of baby pics I have taken since the twins were born ... I know whatever happens I have wonderful memories of my two beautiful babies.

High jinks

From standing on tall buildings and pulling at the branches of an overhanging tree to table top dancing - the twins have been in fine form today.

THings are getting back to normal here this week. Holidays are over. Swimming and music have resumed. So has Hannah's EI playgroup and tomorrow the brats are off to preschool and I have a full day teaching. We have had a great holiday. The kids loved having their cousins to stay. Last weekend was very busy with our annual turkeyfest on Sat followed by the twin's cousins all 3! getting baptised on Sunday. Dad came for a visit and has gone back to QLD tonight. I hope we all have a good term. It ends with the anniversary of Mum's death - I'd like to be with Dad as close to it as I can - I'll ahve to see what I can do.

Master Chef

MC Australia finished this week - we have been quite taken with it - it doesn't have the meanness of spirit that some other reality tv shows seem to have - this has been a fun competition where people share and develop passions related to food and cooking. Judges acknowledge the successes of the participants as well as pointing out their errors. My favourite was a young woman called Justine - she was one of the 6 finalists while Kit liked a rather greasy haired serious fello with a hat fetish called Chris - in fact he cried when Chris got eliminated.
Anyways all this tv viewing prompted the following anecdote -
On Saturday I made a delicious dinner of some sort. I had also bought ingredients for a simple meringue and cream dessert. After informing me that his dinner room was full but that he was ready for dessert - Kit set out and put together the dessert - with his own inevitable style. He was quite sure that Chris would like to see it and maybe even eat some one day - when he puts the recipe in his cookbook!!lol.
Chef at work
Photo for Chris
Delicious
satisfaction

Park again...

Well we all survived - last week our family grew from 4 to 7 with my SIL's 3 children coming to stay for a few days. Theya re 10, 8 and 4. It was lots of fun and there were not many altercations at all - in fact I hope they come agian next holidays. We went to the park, walked to the local shops and got some gelato, and on the one windy day we took them to the local indoor playground/centre where they had a ball - 'we' being my ever wonderful MIL, who also took me to see the finalists in Opera Australia's Young Performers competition on Sunday night. That day we went and had lunch with friends who live in the same suburb - and who also have a daughter with DS - so yep - I'd ahve to say it was a good weekend.
It has been lovely here these school holidays. One fine Saturday we took the brats to the park again...

A stage is for dancing
I love you sweetie
Home in time for some dress ups before dinner

Pride

"devoted wife and mother ..."
Loved Forever. In God's Care Forever.

I am so proud of my Dad. Here is the photo (slightly edited) he sent me on Saturday afternoon - he said the lady from the cemetry where Mum is buried rang him at 3 - and I bet he was up there at 3.30 to check it out, take his photoes and send them through to his daughters. I sometimes watch him (he is staying with us usually for a week a month at the moment - which I love) and wonder - I can't imagine his grief. He loved my Mum since he was 16. They were thick as theives and rarely needed 'outsiders' for want of a better word - Mum was his best friend and he was hers. In a strange way I hope that one day I do find out how he's feeling though - the grief of a great love indeed - flawed and imperfect no doubt - but then that is what makes it great isn't it? He has marked her passing with grace and love and watches over her children with double devotion since she has gone. We will miss her forever but I know that Dad is counting on being with her again in the future.