Link to Heaven

My Dad passed away 18 months ago from leukaemia. The little girls have found if difficult with the finality of no further physical contact. But being children growing up with the Internet they have a solution...... email. I have repeated requests to email this and that to Grandad in heaven. I miss him so, they miss him, if only it was that easy to say all that you meant to and all that you now want to. I'm sure though that I'm not the only person that wishes heaven was online.

Haunting

My job is a bit of a mixed bag. There are parts of it that are great. The patients you get to know that go through treatment and transplant and come out the other end, go back to a life not dominated by hospital appointments. Then there are other parts of my job that wake me up at 2am to haunt me. I don't think I will ever not be haunted by the cry of a mother who is told that her daughter has relapsed again and there is very limited hope. The depth of the utter sadness that was emitted in her cries will never leave me. There is no fixing the situation. There is never the right words. Everything becomes insignificant mumbling. There are somethings I can leave at work but others are too sad and to involved and will always be there.

Holidays

Yay! School holidays are here. Reasons I love school holidays:

1. 
   
   NO school lunches to pack


2. 
   
   NO uniforms to iron


3. 
   
   NO rushing every morning to get everyone out the door on time


4. 
   
   Time to spend doing craft activities ALL day


5. 
   
   Time to sit in the park all day and eat hot chips in the winter sun


6. 
   
   Time to go to the movies

Now why is it that I'm not homeschooling I wonder......

This school holidays is going to be extra special because of a new edition to our family. Lily our six week old Golden Retriever puppy. She is very cute and much loved by the girls and our big retriever Ben.

Grading Behaviour

The girls all got their report cards from school on Friday. In the state that we live in they have recently commenced giving children a grading from E-A on behaviour. I have several reservations about the wisdom behind this approach. First and foremost they are human beings. So who in this world behaves perfectly all the time? Why do we expect our children to be perfect in their actions and reactions 100% of the time. THEY ARE CHILDREN - due to the maturity of their brains they are not going to make good, sound decisions all the time. Cut them a break, they are learning - isn't that what childhood is about, learning. Don't they have enough pressures on them. Why do they have to all of a sudden be little perfect adults in the education system. The education system is not preparing them for real life through this grading system. You do not get graded on your behaviour in your work, at university, at home, as parents, as partners, as community members (unless of course you break the law). Sometimes as adults we strive to do the right thing all the time but it doesn't always work out that way and you do make wrong decisions and behave in ways that in hindsight you wish that you hadn't. That is part of being human.

If they are going along ok and generally do as they are asked and are respectful most of the time to their teachers, peers and the environment isn't that all that really matters. As long as the girls are not having any behaviour issues that are inappropriate and harmful who on earth has the right to grade them. It is a purely subjective assessment anyway. Where are the guidelines and who draws them up. One teacher may see a child's behaviour as creative and questioning and a good thing and another will not.

So what is the point. It will not tell me anything that I don't already know. I know that my girls will try most of the time to do the right thing but sometimes temptations and lack of control means that they wont. That they are kind and caring but sometimes loose their temper and say things they don't mean in the heat of the moment. That they are children who are discovering the world and relationships and through that discovery grow and change in their opinions and the way they act. That I love them no matter what and think that they are fantastic.

Steps Forward

Time to celebrate the accomplishments of my girls, on the outside they may not look significant or important but to us and to themselves they mean an awful lot.

1. My eldest daughter Rose, got a B for reading!! I'm so proud of her. Right from when she was a little girl she loved to have books read to her. What a big shock for her when she realised at school that she would have to do it for herself. It has always been said that if you read a lot to your children from when they are babies and small children that they will take to reading naturally, this wasn't so. She has struggled on and off over till now in year four when she has finally caught the reading bug. Rose has also got the hardest worker award at gymnastics for the last 2 weeks in a row.

2. Miss T drew than cut out a paper pattern out of scrap paper for a skirt. She than took it to her Grandmother, who than helped her make it. Wow. She is such a creative child.

3. Miss E has learnt how to skip. She is now obsessed. Anything that can be turned into an approximate length eg jumpers is turned into a skipping rope.

My Mate

This is a picture of our fantastic dog Ben. I love him to bits. He is only a few months older than Miss T. He is so placid and friendly. The most undemanding dog on the planet. He loves to be near us but not on top of us. You can just see in the background his teddy bear that he takes everywhere with him. Sometimes I think he is the only one that listens to me in this house. Love you Ben.

Mental Health Day

I hope that no one gets me wrong in this post. I love my girls very, very much and would do anything and everything I can to help them achieve their potential in life. It is just that I'm at a point nearly seven years down the track where I'm feeling a little burnt out and over the therapy, the intervention, the fights, the advocacy all the rest. I hate the way I'm thinking at the moment. I just am finding it so hard to motivate myself and keep it all up. I did something terrible today and took a mental health day from Miss T's speech therapy session. For some insane reason it just all seemed too hard today.

I guess a lot of this has been building up as the year progressed. We didn't have a fantastic start to the year with Miss T and lack of school resourcing as she commenced year one (that all deserves a separate post). Miss T is high functioning, because her CP is ataxic it is not all together noticeable unless you look closely at her skills and development. She has beautiful social skills, is super compliant and has learnt how to mask her disability which often works against her when asking for support.

We source all her therapy and educational support services privately, please believe that I don't begrudge on cent spent on all of it. I know that she wouldn't be where she is today without it. I am grateful that we have been in the position to do so. There are several positives to using private services for us, including choice of care provider, assessments that are not biased by funding (funding is the equivalent "F" word in our house), continuity of care, being listened too, not being knocked back for intervention based on poor government policy, the list goes on. I know we have it so much better than many families and I apologise to anyone who is offended by my post but I'm just so tired of the constant appointments, juggling and the pure unfairness of government policy in this country in regards to disability resources for children.

I kind of wonder sometimes what it would be like to take a few months off from therapy and Miss T's educational support program. But I don't dare. I don't think I could handle placing her in a worse position by neglecting her needs. These are her needs and I guess I just need to get on with it and keep going. My motivation will come back until then I will just have to make myself keep up with her therapy and support. I promise no more mental health days in the near future.

Cheeky Monkey

I work a 10 hour shift every Monday and Thursday in an oncology day unit about 45 minutes by car from home. Every work morning I get up at 5am to make the girls lunches. Now I find this one of the least enjoyable parenting tasks. It is not always easy to pack something nutritious, that suits the girls tastes on that particular point in time and that will withstand the heat.

DH has the job of getting the girls organised on a Monday as he has every Monday off and I leave at 6am. It is his day where he has the total responsibility as I often don't get home till 7.30pm from the train. Anyway at a 11am this Monday morning, the day unit was busy and I was interrupted by a phone call from the school. Now I don't get any other phone calls at work really as the nature of the job it is just too hard to get away from patient care area to answer them. The lady on the other end starts:

"Do you realise that Miss T has no lunch, her teacher has had to give her some morning tea"

Me: "I packed the girls lunches this morning before I left for work, she definitely has lunch made." Meanwhile I'm thinking cross thoughts about DH - who of course it had to be his fault for not sending them. I then told the school that I would get on to DH to find out what happened.

When I rang DH he said that he definitely packed the lunches in the bags. Mystery...... So he checks the car and there finds Miss T's lunch stuffed under the front seat. He returns her lunch to school.

When I saw Miss T's teacher the next day, I apologised for the mishap and thanked her for giving Miss T some morning tea. She found it quite funny because when she asked Miss T why she didn't have any lunch Miss T came up with "Daddy said I wasn't allowed to have any lunch because we have no food"! (I had done a $400 grocery shop the day before) Where she came up with that I don't know. I'm sure the teacher may have believed her for a second because she is so skinny. The cheeky monkey, it took some explaining to get out of that one.

Parent Teacher Interviews Pt 1

Well it's that time of the year again and I don't know if I'm looking forward to it. Sure I want to know how the girls are going at school but I think I have a pretty good feel for where they are at. I just don't do confrontation well and often go out of my way to avoid it all together. Don't get me wrong I don't mind their teachers as a whole and neither of them are horrible but I just guess I see the girls needs differently.

My baby who is 5 had to go into year one this year because there is no more preschool in our state and as the prep year has just been introduced into our state she missed out by 5 weeks of the birthday cut off. Most of the children in her class are already 6 and turning 7 this year. So developmentally for a start Miss E is behind is some areas. She is very social and has great integration skills but lo and behold her reading skills are that of an average 5 year old. Not brilliant but not disastrous. She loves books and is reading early readers well with confidence and knows the allocated number of sight words enough to get her to the 100 words they need to know by the end of the year. But this is not good enough for her teacher who has told me that she expects a lot of her students and pushes her students hard. That's ok when your 7 to be performing at a certain level but not when you are 5. Miss E wasn't even born when some of these children would of been walking and talking. It just seems so much to me suddenly expect children be at a developmental level that they are not ready to be at. I kind of wonder why this teacher expects so much of the children in her class, is it because she wants them to perform well for themselves or for her own ego to prove that she has a class of top performers. I think it is sad to put a child's love to learn and discover behind performance markers. I know this teacher is going to be disappointed in where Miss E is in respect to the class but I don't want to be disappointed in my little girl when she is doing the best she can for her age.

Maybe part of this stems back to some form of guilt on my behalf. Miss E was a surprise but much wanted edition to our family. There is only 15 months between Miss T and Miss E. I know on some level that I have done wrong by my baby. I put Miss T's needs and problems in front of her on a lot of occasions. I went through a period of sadness around Miss T's diagnoses and I know I should of been more focused on all of my children. Don't get me wrong I have never, ever neglected any of my girls but sometimes there were choices I had to be make and often someone missed out and that was my baby. She spent so much of her early years carted of to appointments and therapy with her sister part of me can't help but wonder that if I had scaled back on some of it and I had focused more on her needs and interests she would be coping better a school than she is.

Homeschooling has been discussed in this family a bit of late and the more and more I think about it the more and more I feel it would allow me to adapt the girls learning to their needs and not make them adapt their learning to the needs of narcissistic teachers.

But I'm Not Cold

To my girls:

When Mum is cold we're all cold so yes that means you must PUT YOUR JUMPER ON!!

Take heart girls it's a Queensland winter so it will be short lived but until it is over you will stay warm when you are outside.

Judgements

On a prem forum that I read there has been some recent discussion about the negative judgements that are made by the general public against children because of their size and stature. It is so sad that there is such harsh perceptions about a person's ability based on their size. It was interesting that as the discussion progressed that there were stories about harsh and unfair judgements made about children that were either small for their age or tall for their age. I wonder were the public get their screwed perceptions from.

I remember when Miss T was 2, she was still very small in stature and she was unable to walk and unable to talk but she loved to go to the indoor play centre with her older sister who was then 4. I used to play with her in the babies area because the larger equipment wasn't accessible for her and because of her poor balance and coordination she could easily fall with the other children's boisterous play. Another mother came and sat next to me one day with an eight month old baby. We got talking with the normal mother/infant/baby chatter and then the dreaded question "and how old is your daughter?" Now this was the time of Miss T's diagnoses, so I was very sensitive and was well aware of her delays. When I told this mother that she was 2 years old, she looked Miss T and I up and down with a look of disgust and picked her daughter up and walked away. I felt like saying "don't worry prematurity and CP aren't catching". What was she scared of - did I present what she feared the most - having a child that isn't "normal" or was it just pure rudeness.

I don't think there is that much that can be done to change some peoples ill concieved perceptions about someones size and abilities. I can although make sure that my daughters grow up without the need to judge people harshly in regards to colour, race, size, ability. Maybe that has been one of the upsides of this journey, that at least my girls understand that behind every person who doesn't fit into a "normal" box lies feelings and people who love and care for them.

But then again what is normal?

Keep going forward

Life doesn't stop for anyone, particularly when you have three girls to run around after. Not that I particularly mind because I love to be busy. All my girls were premature. The eldest and the youngest though had very smooth rides and really in the scheme of things their births and their really minor prematurity (34 and 36 weeks) have not had any long standing negative effects. Little Miss T though who was born at 28 weeks nearly seven years ago has taken us on an incredible journey. It has been an unbelievable mixture from complete and utter sadness to amazing joy. Miss T has ataxic cerebral palsy as a result of her prematurity. Life is for us as a family one step forward, 2 steps back. I just need to remember to keep taking those forward steps.