Changing times

Why is it when you finally think you have got things sorted they change again. I was really looking forward to Kyle starting morning kindergartion with the new hours - three longer days. But they have decided to keep the status quo so this now means getting extra help first thing in the mornings to get him to kindy by . . . 8.30am! I don't think so. I've only recently stopped having someone help me shower so I'm not the fastest - I still can't bend to tie my shoe laces. My wonderful new help has zapped off to Los Angles to train as a yoga teacher! And my other wonder help is pregnant and can't bend. So I'm organising new people this week and have found one person who is keen for work while on holiday for 10 weeks. I've come to the conclusion that it is better to have great people for shorter periods than be stuck with annoying ones!
Tuesday, April 17, 2012 10:28:14 PM (New Zealand Standard Time, UTC+12:00)      Comments [0]  disability

challenging times
Wow it's been so long since I've had the energy to write anything. Kyle had his surgery at the beginning of November and we spent 8 nights in hospital. It was a big op with two teams working on his hips. How do you ever prepare a 3 1/2 year old for such major surgery? Thank goodness my mother was with me for the pre-op before hand and she got up very early on the day of op and gave Kyle some breakfast. We'd learnt from experience children don;t cope being staved for hours. Bruce arrived before his surgery and was able to carry him into the theatre - kyle still had his socks on he refused to take them off! How I cried when he went in - you are supposed to protect your children and not inflict pain. When we finally saw him he was comfortable and eating an ice block! What a journey. It was so hard being a disabled mum when there was no fully accessible toilet on the ward - well one where the door closed. So I used the Ronald MacDonald family room shower and toilet on another floor! Now I've just had a grueling hip replacement - but that another story...

Monday, February 27, 2012 8:41:47 PM (New Zealand Daylight Time, UTC+13:00)      Comments [0]  dasBlog | disability | parenting

Another Challenge
Sometimes you can have so much going on in your life that it is too hard to write about it and you just don't have the energy when you are in survival mode. In two weeks time we are off to Starship Hospital in Auckland for our third visit. It appears that Kyle's hips are not developing properly and at the tender age of 3 he needs to have fairly major surgery to tilt the femur into the hip socket. It's also going to be very challenging being a disabled mum in the hospital situation. It was really hard when we were there last time to get close to Kyle on a hospital bed when I was in my wheelchair due to the lack of space and equipment. Plus I'd like to be able to stay with him but I'll struggle on a mattress on the floor! On the really positive side Kyle has started Kindergarton - without any support. Apart from other parents parking in the mobility park, it's going very well.

Monday, October 17, 2011 1:40:32 PM (New Zealand Daylight Time, UTC+13:00)      Comments [0]  disability | parenting

Support, support, support... frustration
Well I guess it had to be a Monday really... my support worker arrived and was going to take Kyle to the Toy Library so I could do some computer work. She changed Kyle's bed - but put all the blankets on top of the duvet and had his under blanket twisted...again. I could live with that but then discovered she put my hair dying in with the sheets. Sigh. Last time we went to the Toy Library we got two things, this time they came back with 4 things and no change in my purse - oh there wasn't much room in the car for the tunnel, slide, key board and DVD! Big sigh! Then I trotted out for an appointment and asked for some roast veges to be prepared for dinner i.e. to cook with dinner. Came home and veges cooked, big big sigh. Support worker goes I clean up kitchen and find oven book to turn off alarm that keeps beeping... support?

Tuesday, June 28, 2011 9:21:13 PM (New Zealand Standard Time, UTC+12:00)      Comments [0]  

Publicly Parenting
Most parents do not have to share reasons for their parenting style or parent so publicly as disabled parents. While I do appreciate people's support sometimes I really wish people would just butt out. While I had my lovely auntie staying and supporting me when Bruce was away it was obvious we had some different strategies when Kyle wouldn't do as he was told. She did however appreciate that it was not helpful to just pick Kyle up when he wouldn't come somewhere. Kyle's OT keeps telling me Kyle will just have to learn to come when I tell him. Well that's all well and good but if I need him to get up on his bed so I can change him as he is stuffing around, it is so frustrating that I can't physically lift him. We have been having such battles to get his nappy changed and he is so resistant to toilet training. I felt quite dis-empowered when his OT said to give toilet training a break for a few months. Kyle is now 3. I really want to work with him to get out of nappies as I think he is a smart wee boy and it will resolve a huge amount of conflict and time wasted trying to get him to have his nappy changed. Ultimately, I am his mother and we make the decisions about what issues we tackle. In preparation for this great task, I brought a 5 pack of transport underpants for my car mad son!

Thursday, March 24, 2011 9:53:31 PM (New Zealand Daylight Time, UTC+13:00)      Comments [0]  

Kyle turns 3!
Well life has certainly been full on the last few months. Bruce has been away locuming so Kyle and I have been managing at home, with support. I've worked out that I've had people staying with me since Jan 3rd! We now have the house to ourselves... well until the weekend anyway. It's kind of been doing my head in not having any space to breath. Last week I was so desperate to go somewhere on my own -one of my good friends said I could try saying I need to get out to centre myself. I will next time. I did feel frustrated that I couldn't get out for a walk on my own or with Kyle. I know people were trying to be helpful but I was starting to feel killed by kindness! Kyle turned 3 last week! Very exciting. We had a small party on Sunday morning with lots of yummy food -ricebubble cake, fairy bread, face biscuits with pink icing, strawberries... All went very well and I'm so glad I did something low key that suited us rather than following the kids party formula. I made a chocolate cake and decorated it with a racetrack complete with a little car and guess what Kyle grabs before he's even blown out the candles - the car!

Wednesday, March 09, 2011 10:08:58 PM (New Zealand Daylight Time, UTC+13:00)      Comments [0]  disability | parenting

Wow we have been doing some fun things!

When I last wrote I was feeling very despondent about getting enough support. Things have really turned around. I have got two really switched on women supporting me - one is the mother of a 2 year old and the other is a trained nanny. Plus I've got a lovely student helping me over summer. What a difference to have effective and quality support. I feel a lot less tired and am starting to feel a bit more in control of my life. I'm also trying to be very clear with want I want and deal with key issues. I was so delighted with my support person response when I raised with her the previous day she had let Kyle go up the back stairs to the back door from the car, she had thought about it too. And said to me that she wont let Kyle do that in the future. Great. She understands I can't get Kyle if he does that. Kyle and I have made it from the car into the house on our own! We achieved this two weeks ago and I'm so excited as we are nearly there in terms of getting out of the house! We have also been to two birthday parties. Kyle said to me today "Kyle's birthday party tomorrow"! Now there is the whole issue of toilet training... hmm... more later... hopefully some progress.

Monday, November 29, 2010 10:09:54 PM (New Zealand Daylight Time, UTC+13:00)      Comments [0]  dasBlog | disability | parenting

Going on an impromptu road trip

Life is has been very hard over the last few months. I'm facing issues with my support people not understanding the roles they need to act in to ensure I'm supported in my role to be a mother. I've got one support person leaving at the end of the month to go to Australia and another potential person who just didn't turn up on Friday so Kyle and I never made it to music and movement - our one organised activity a week. I've been thinking a lot about the roles and the need to be so clear with people when they begin working. It makes a significant difference to my well being when I am supported and not watching from the sidelines while someone else interacts with my child. When we go to feed the ducks I want to be part of the process not watching like a grandmother in my wheelchair. How do you change this, when all through my life I've been taught to be passive and believe the best in people. But is it really ok when you are visiting friends with your upset child sitting on your lap and your support person lifts him away without asking permission. Any more importantly, why didn't I say anything. There's a lot to think about and some discussion needs to happen and I'm only now beginning to formulate my thinking and identify the issues. A lovely thing happened this morning, my wonderful friend E texted me and said come with us to Wanaka for a drive while she did some missions! Initially I said no, we had things to do and then I thought why not! So we had a road trip and the most wonderful time in the Wanaka playground and I felt like a real mum and out with a friend and wee girl! This is what it is supposed to feel like. Thanks E for a great day

Monday, September 06, 2010 10:02:44 PM (New Zealand Standard Time, UTC+12:00)      Comments [0]  disability | parenting

Feeling tired and trying not to compare my mothering efforts

It's been a long month and I'm now down with a bug. I truly don't know where people find the time to write up their daily blogs or network sites - I'm so busy all day and stuffed by evening! I've been struggling a bit with not being able to take Kyle for a walk or get out my car with him. B has still be working very long hours and I sometimes feel that I should be out and about more with Kyle. It's hard not to feel trapped some days when you just want a change of scene or to visit someone. I can't even get out and post a letter or go to the supermarket. I guess as a consequence I've become very organised! I also think Kyle's vocab and language development has improved hugely due to all the conversations we have - that has to a positive outcome. I will have to work on finding another playgroup for Kyle and also try and get half a day a week so that I can have some time out and catch up and things. Let's kick this bug first.
Sunday, July 25, 2010 10:15:59 PM (New Zealand Standard Time, UTC+12:00)      Comments [0]  

A busy couple of months

There is snow on our lawn and has been for a week now and it's been so frosty. Poor Kyle has had a cold for ten days and is tolerating me wiping his nose.. just! Kyle's been making great progress with his "walker" trolley and demands it in the morning and is using it throughout the day - I can't wait until his walking as I'm sure that will make a huge difference getting out and about ie getting him to the car. Bruce has been working very long hours so I've been missing his help especially at the witching, getting dinner, making dinner and putting K to bed. He's been really good but at times over the weekend I really wish I was able to get out with him and go visiting or just for a walk. We did lots of lego and other things! Now I just need to work out the balance of getting enough help to do things with Kyle and not get too tired and having some space to be on my own and catch up on my head space!

Tuesday, June 29, 2010 9:41:11 PM (New Zealand Standard Time, UTC+12:00)      Comments [0]