It's been a busy week this week with lots of ups and downs. We've had to cancel our regular therapy busy-ness in order to just get through this weeks busy-ness.
It started with the funeral of my friend's husband on Monday. So so sad. It brought back that collective feeling of sadness that I used to have all the time when Ashlea was a baby - I didn't just feel sad for me and Ashlea but for all the children and families in situations they didn't expect to find themselves in. The funeral brought that feeling back - I was sad for H in her situation but also for all my friends going through difficult situations.
Tuesday was Ashlea's preschool meeting which I have already blogged about.
Wednesday was Remembrance Day which is always sad. We had a service at work around the flag pole - the Last Post always reduces me to tears. For anyone wondering why I get emotional about Remembrance and Anzac Days my Grandfather was an Anzac so I am quite passionate about the importance of remembering the sacrifice of previous (and current) generations. Wednesday night I got my first glimpse of the "Next week on RPA" trailer. I am much more anxious about being on TV this time than last time and was on edge throughout the whole show just waiting for the last minute when they showed what would be on next week. I hate to think how nervous I will be next Wednesday!
Thursday Emma had kindergarten orientation. Don't tell her but that made me feel teary too! The current kindies sang a song to the new kindies - something about look at you you're coming to school. It was very cute but I think all the parents teared up at the thought of their little ones being big enough to start school. I think Emma is still quite hesitant about the whole thing but starting to look forward to it too. She is very friendly and talkative which covers up the fact that she gets very anxious about things - especially new things. The children met their buddies' (year 5 kids who befriend them) yesterday and the buddies had made them a card to welcome them to school. Emma carried hers around all afternoon.
And now the best part of the week - tomorrow my sister gets back from overseas. I am SO excited - don't tell her but I've been a bit lost on the weekends without her (we often disappear to the shops for awhile on Saturday afternoons). The kids are pretty excited too - especially as they have heard about the bags of 'Halloween candy' that are coming their way. Tomorrow night I'm also catching up with my good friend S who is newly back from Ireland - very exciting! Tomorrow is going to be a great day.
Friday, November 13, 2009
Wednesday, November 11, 2009
Special Exposure Wednesday
I had a completely different photo in mind for today...until this happened.
Sleeping child (Audrey) complete with sauce covered face:
But where is she sleeping I hear you wondering...good question. Lets pull back a little and have a look:
She often threatens to nod off during dinner if she hasn't had a sleep during the day - but this is the first time she has turned the chair into a bed!
Don't forget to check out all the other Special Exposure Wednesday photos here.
Tuesday, November 10, 2009
Preschool Planning Meeting
Today we had a meeting at preschool to plan for Ashlea's arrival next year. We had quite a few people at the meeting and quite a few things to discuss!
As well as the preschool director and the special needs teacher, the Spastic Centre sent along Ashlea's OT, physio and the early educator. Unfortunately Ashlea's therapist from RIDBC was unable to attend.
Our list of hot topics included the following:
* disabled parking - the preschool are going to apply for a disabled parking space out the front of the centre
* Ashlea's level of supervision - next year there will be a special needs teacher and a teacher's aide to work with the 3 children with special needs. I'm not sure what their needs are but I'm pretty sure one of them is the child I blogged about on Audrey's first day at preschool - who I am guessing is ASD. He has pretty high needs too so I hope the preschool haven't 'bitten off more than they can chew'. Hopefully 2 staff members to 3 children should be plenty. I stressed to them again that they need to have their eyes on Ashlea at all times. And that means ALL TIMES.
* physical handling of Ashlea - we talked about her use of her walking frame and wheelchair, and how we are trying to get away from carrying her around and moving towards her using her mobility aids as much as possible.
* nappy changing - they have a change table but I suggested they use the floor otherwise someone will end up on compo with a back injury from lifting my little pork pie.
* feeding - I am unsure whether I will 'train' the staff myself or see if I can get a nurse from the hospital to come out and do the training. It would feel strange training people to tube feed Ashlea seeing as our 'training' involved being given the equipment and the child and a wave as we were sent on our way!
* vision support - the RIDBC are going to continue to support Ashlea while she is at preschool. As well as providing a visual assessment of the centre, they are happy to train staff and produce large print materials.
* equipment - the funding application for her 2 chairs is under way - I just wanted to make sure today that the chairs had actually been ordered - someone is checking on that!
After all this discussion we won't really know how its going to work until we 'suck it and see'. I'd be interested to hear from other preschool Mums about how the routine works for their child. At the moment I am thinking that on arrival at preschool Ashlea will be in her walking frame so that she is able to walk around to the different activities and participate. At group time she will be in her corner chair on the floor - same as at morning tea. Usually after that they have outdoor play - I'm not sure whether she should be in her wheelchair or her walker at that stage. Which will give her more freedom? Will she be too tired for the walker? Not sure how that will work yet. When they have free time indoors I think she will need to have some crawling time on the floor - it is her primary method of getting around and she will get antsy if she doesn't get to get down on the floor and move around!
The bottom line is that we are going to have to play it by ear and see what works and what doesn't. I'm pretty excited for her to have this opportunity to go to preschool - I really hope she enjoys it and it is a positive experience for her.
I am REALLY looking forward to Tuesdays next year when both Audrey and Ashlea will be at preschool and Emma will be at school. A whole day of freedom. Well a whole 5 hours anyway! I have been counting down the days since the beginning of this year!
As well as the preschool director and the special needs teacher, the Spastic Centre sent along Ashlea's OT, physio and the early educator. Unfortunately Ashlea's therapist from RIDBC was unable to attend.
Our list of hot topics included the following:
* disabled parking - the preschool are going to apply for a disabled parking space out the front of the centre
* Ashlea's level of supervision - next year there will be a special needs teacher and a teacher's aide to work with the 3 children with special needs. I'm not sure what their needs are but I'm pretty sure one of them is the child I blogged about on Audrey's first day at preschool - who I am guessing is ASD. He has pretty high needs too so I hope the preschool haven't 'bitten off more than they can chew'. Hopefully 2 staff members to 3 children should be plenty. I stressed to them again that they need to have their eyes on Ashlea at all times. And that means ALL TIMES.
* physical handling of Ashlea - we talked about her use of her walking frame and wheelchair, and how we are trying to get away from carrying her around and moving towards her using her mobility aids as much as possible.
* nappy changing - they have a change table but I suggested they use the floor otherwise someone will end up on compo with a back injury from lifting my little pork pie.
* feeding - I am unsure whether I will 'train' the staff myself or see if I can get a nurse from the hospital to come out and do the training. It would feel strange training people to tube feed Ashlea seeing as our 'training' involved being given the equipment and the child and a wave as we were sent on our way!
* vision support - the RIDBC are going to continue to support Ashlea while she is at preschool. As well as providing a visual assessment of the centre, they are happy to train staff and produce large print materials.
* equipment - the funding application for her 2 chairs is under way - I just wanted to make sure today that the chairs had actually been ordered - someone is checking on that!
After all this discussion we won't really know how its going to work until we 'suck it and see'. I'd be interested to hear from other preschool Mums about how the routine works for their child. At the moment I am thinking that on arrival at preschool Ashlea will be in her walking frame so that she is able to walk around to the different activities and participate. At group time she will be in her corner chair on the floor - same as at morning tea. Usually after that they have outdoor play - I'm not sure whether she should be in her wheelchair or her walker at that stage. Which will give her more freedom? Will she be too tired for the walker? Not sure how that will work yet. When they have free time indoors I think she will need to have some crawling time on the floor - it is her primary method of getting around and she will get antsy if she doesn't get to get down on the floor and move around!
The bottom line is that we are going to have to play it by ear and see what works and what doesn't. I'm pretty excited for her to have this opportunity to go to preschool - I really hope she enjoys it and it is a positive experience for her.
I am REALLY looking forward to Tuesdays next year when both Audrey and Ashlea will be at preschool and Emma will be at school. A whole day of freedom. Well a whole 5 hours anyway! I have been counting down the days since the beginning of this year!
Sunday, November 8, 2009
Camp Outing
The other day Emma and Audrey decided they wanted to camp out in the backyard for the night. Seeing as they are only 5 and 3, and we don't have a tent and rain was forecast, I managed to talk them out of it. They were pretty keen on the idea though, so we settled for a camp out in the lounge room instead.
We decided to do it on Saturday night so it wouldn't matter too much if nobody got any sleep. They have been looking forward to it all week, with Audrey repeatedly asking if today is 'camp outing day'.
The day arrived with much excitement. I was sent off the to shops to buy the camping snacks - the most important part of the event of course - and the camping beds were made up. As you can see from the pictures I don't really like to camp so we made sure we were comfortable. I set up the mattresses on the floor with their doonas and we snuggled in to eat popcorn and untoasted marshmallows while watching the Cars movie. Emma was very excited and there was a lot of talking and getting up and down. Audrey flaked at the first opportunity.
Of course I had to stay in the lounge room with them which meant sleeping on the couch. I am actually pretty used to sleeping on the couch as I am very good at falling asleep in front of the TV - and sometimes not waking up until the next morning!!
Emma declared it the 'best camping out day we've ever had'.
We decided to do it on Saturday night so it wouldn't matter too much if nobody got any sleep. They have been looking forward to it all week, with Audrey repeatedly asking if today is 'camp outing day'.
The day arrived with much excitement. I was sent off the to shops to buy the camping snacks - the most important part of the event of course - and the camping beds were made up. As you can see from the pictures I don't really like to camp so we made sure we were comfortable. I set up the mattresses on the floor with their doonas and we snuggled in to eat popcorn and untoasted marshmallows while watching the Cars movie. Emma was very excited and there was a lot of talking and getting up and down. Audrey flaked at the first opportunity.
Of course I had to stay in the lounge room with them which meant sleeping on the couch. I am actually pretty used to sleeping on the couch as I am very good at falling asleep in front of the TV - and sometimes not waking up until the next morning!!
Emma declared it the 'best camping out day we've ever had'.
Saturday, November 7, 2009
RPA Where Are They Now?
We have a date for when we are going to be on TV again!
Our episode is airing on Wednesday 18th November - Channel 9 8:30pm (in the eastern states - not sure about others).
We don't get to see the episode before it airs, so there is always some anxiety leading up to watching it...what if we totally embarrass ourselves??? I guess you can all watch and see for yourselves!
For those overseas I don't think there is anyway to view it online unfortunately. Let me know if you really want to watch it and I'll see what I can do.
Our episode is airing on Wednesday 18th November - Channel 9 8:30pm (in the eastern states - not sure about others).
We don't get to see the episode before it airs, so there is always some anxiety leading up to watching it...what if we totally embarrass ourselves??? I guess you can all watch and see for yourselves!
For those overseas I don't think there is anyway to view it online unfortunately. Let me know if you really want to watch it and I'll see what I can do.
Friday, November 6, 2009
Mother's Group
Not long after Emma was born I joined a Mother's Group through the local community centre. It has been a great way to meet other mums with children the same age as mine. At first I was a bit worried that MG would be a bit competitive - you know those mums who are always telling you what their child can do, and how advanced their child is compared to yours? Or how great their house / car / whatever is.
Thankfully our group didn't turn out to be like that at all. In fact ours is almost the opposite - if we were competitive it would be in terms of what can go wrong in life!
Out of our group so far:
- 3 of us have lost a parent
- one has secondary infertility
- one is currently going through chemo for breast cancer
- that same one's 5 year old daughter is losing her hearing
And then there is me...extremely premature twins, one left with lifelong disabilities.
Out of this list of shocking things that has happened, my friend N's breast cancer shocked me the most. That reminder of our human frailty and lack of control is what terrifies me as a parent. That is until now. Now something even more shocking has occurred within our little group. One friend's HUSBAND died unexpectedly on the weekend. Something to do with his aorta. Totally shocking. None of us would have expected when we first met that within 5 years one of us would have a child with multiple disabilities, one would have breast cancer and one would be a widow!!
I haven't spoken to her yet. I don't know what to say. "I'm sorry" just doesn't seem to cut it. From my experience with Ashlea though, I now feel that it is better to say something rather than nothing. Saying nothing is like pretending it all hasn't happened.
For those of you who read this who are pray-ers please keep this family in your prayers. Their son is due to start school next year, and my friend H has to now figure out life as a single mum while grieving for her husband.
Thankfully our group didn't turn out to be like that at all. In fact ours is almost the opposite - if we were competitive it would be in terms of what can go wrong in life!
Out of our group so far:
- 3 of us have lost a parent
- one has secondary infertility
- one is currently going through chemo for breast cancer
- that same one's 5 year old daughter is losing her hearing
And then there is me...extremely premature twins, one left with lifelong disabilities.
Out of this list of shocking things that has happened, my friend N's breast cancer shocked me the most. That reminder of our human frailty and lack of control is what terrifies me as a parent. That is until now. Now something even more shocking has occurred within our little group. One friend's HUSBAND died unexpectedly on the weekend. Something to do with his aorta. Totally shocking. None of us would have expected when we first met that within 5 years one of us would have a child with multiple disabilities, one would have breast cancer and one would be a widow!!
I haven't spoken to her yet. I don't know what to say. "I'm sorry" just doesn't seem to cut it. From my experience with Ashlea though, I now feel that it is better to say something rather than nothing. Saying nothing is like pretending it all hasn't happened.
For those of you who read this who are pray-ers please keep this family in your prayers. Their son is due to start school next year, and my friend H has to now figure out life as a single mum while grieving for her husband.
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