Fear

Why did I never see what was really in front of me? Why did I hang onto the stupid notion that everything was OK? See I have always hung onto (gripped for dear life)the fact that cognitively Miss T was fine, smart, clever even. In my state of delusion I felt that if she was OK cognitively than she would get through school and come out and be able to independent and live her life. Stupid, stupid, stupid. Not to be, in fact those words I least wanted to hear were uttered "intellectual impairment" by the developmental pead.

There, the words I least wanted to put out in the world because they represent so much of what I fear for her are out there for all to see. To type them is easier than to speak them. Because to speak them, I would have to choke on them to get them out.

What is it that I fear so much? I fear the sadness of that comes with another loss of some of the hopes for normality for my little girl. I fear the venerability that will inevitably come. That Miss T will be at the mercy of the general community. At times when she gets older, that there will be those that understand and are kind and accommodating but on the other hand there will be those that will use and manipulate her impairments for their own benefit. I fear the the whole future for her now more than ever. I fear explaining it all to her.

I know deep down that we are lucky to have the outcomes that we do. For one, we got to bring our baby girl home. She walks and talks and is happy. Sometimes I think it is just me wanting more for her (and for me) that fuels my unhappiness with the steps back. The truth is that I really want what I can't have - I want the brain damage to go away and to have a normal, happy child that doesn't have to suffer.

Grumpy

We have just gotten back from a short, beautiful break to the coast. I think I have mentioned before here how lucky we are to have such truly magnificent beaches on our door step. The girls adore the beach, even Miss T with her ginger hair and pale skin under loads of sunscreen and neck to knee swimmers thinks that it is grand. The girls are always a joy at the beach because who can possibly be in a bad mood eating fish and chips under the big pine trees (that I too feasted under as a child) with a gentle breeze, the sound of the waves the promise of a swing and a swim to look forward to. Well we did find some grumblers and do you know what they were grumbling loudly about - children! I could not believe what I was hearing. How dare children during school holiday time be enjoying the beach. "Make sure you find somewhere to sit with no annoying children dear" Mrs Grumpy says to Mr Grumpy. "I can't possibly stand the noise" Mrs Grumpy goes on. "Bloody children" Mr Grumpy chimes in. So they sit next to the putrid rubbish bins instead because that is the only area that is not infested with laughing, joyful, happy just to be people under the age of 18.

I found it so sad that children doing what they do best - enjoying themselves and playing are looked on so disdainfully by some members of the community. I sometimes feel that they are seen as second rate citizens that should go back to the days of being seen and not heard. How sad that children's love for happiness (for really that is what we all want at the end of the day) and joy not celebrated and embraced. How do children grow up to good community members if from the day they can remember they are put down by others for the life stage they are lucky to be at. I don't think that Mr and Mrs Grumpy realised that by the time they are elderly it will be those peace destroying children who they once hated so much that will be the nurses, doctors and carers who are looking after them. If children can not be children at a park by the beach during school holidays - where can they?

When?

When does it stop? When do you know that you are there, that you have done everything you can possibly do to make your child's life the best it can be? When do you know that you've found the balance between plain normal life and intervention?

Miss T has had six appointments in the last week. I kind of wonder though in the middle of the night does it truly change the outcome in the end. Am I sacrificing her right to a normal childhood for the better? Miss T is so excepting of it all now but I don't know if she always will be. Sometimes I think the irrational part of me is waiting to stumble upon that doctor/therapist/teacher who can fix her. I sounds ridiculous even to me to read it back because I know there is no cure for PVL. I tell her story again and again but the answers remain almost stagnant. Am I just disappointed because I have the unrealistic expectations that someone may be able to offer me what I am ultimately looking for - normalcy, for the hard parts of Miss T's life to finish?

We've taken a few steps backwards at the moment. I knew they were coming. They catch in the back of my throat and are too big for me at the moment to put into words. The denial part of me thought she had had her deal but as she gets older the true impact of the prematurity, the IVH, the PVL, the ataxic CP is rearing its head. Miss T is starting to realise that life is different for her. How do I make that difference the best it can be for her?

The Nevers

We've had our fair share of "nevers" while parenting Miss T. Right from her IVH and diagnoses and through different therapists. She'll never do this and she'll never do that. Hm, really? Do I really want to propose to any of my children a pathway that is full of boxed in, labeled predictions?

Last night on the 7.30 report on the ABC there was a fantastic, hopeful story of Caitlin McOmish. After contracting mumps as a small child she ended up with meningitis and lost the ability to walk and talk. She also had up to 30 seizures a day. Her parents were told that she would never go to a normal school. She has now graduated with a PhD and is a neuroscientist. Her research involves looking at environmental enrichment and its effect on brain disorders. Well worth a look at.

Her story and research shows me that sometimes I am on the right path when I choose to go against the never predictions. I'll believe something when I see it up until then I will give Miss T all the opportunities in the world to be whoever she can.

Father's Day

This is my second Father's Day without my Dad. I can't escape a sense of longing for my Dad this year. The radio and the letter box seem to be full of warm and fuzzies about Dads and how to show them that you love them. What seems so sad to me is that we wait for a sanctioned day from the materialistic powers to make us show our love and gratitude for those that we love. I wish I had another day, any old day to tell Dad how much I love him and how much I am grateful for all he was to me. I wish I had shown him more kindness and love when I had the chance.

I spent today with other people's Fathers but my own was in my thoughts all day.

Letting Go

Well, Miss T is now 7! She turned 7 on Monday. What a day, she had a fantastic time. I love birthdays. In our house it is not so much a birthday, as a birth festival that seems to last a week. The best part of her birthday she said was going to New Farm Park. Not the presents or the trip to the theme park but just hanging out at the park. Made me see that the hype and the fanfare is somtimes more about me and less about my daughter's needs and desires.

I look at Miss T now at the age of 7 and I feel I have come to peace much more with her early birth and all that transpired as a family for us since. I know there is still much in store for us but I feel a sense of acceptance to it all. Not that I don't feel remorse for what has happened to Miss T but the fact that I am powerless to change the past and all I can do is my best in the present moment for my daughter because really that is the only way I can ever help her.

Peace

Peace:

It does not mean to be in a place

where there is no noise, trouble or hard work.

It means to be in the midst of those things

and still be clam in your heart. - Unknown

To all those parenting children with disabilities this is my wish for you.

But Wait....There's More

Miss T's speech and language problems have always been her major defining symptom of her ataxic cp. After diagnoses at the age of two we were referred on to a specialist provider for cp. The services they could offer because of the "f" word (funding) were haphazard to say the least. Because of this we also sought support from a private speechie who has been our biggest and best advocate from the professional side of things and I will always be indebted to her for her knowledge and empowerment she has given us as a family. She is an incredible advocate for those with severe communication impairment. In her rooms she has a sign that is a quote by someone I can not remember that says "Just because you can not talk doesn't mean you have nothing to say".

Back to the cp specialist provider. The speechie from the team we were under wanted to do an assessment on Miss T when she was 4. At this stage miss T was still really struggling with her expressive speech. The assessment took four weeks in one hour sessions. They were gruelling as an adult to sit and watch let alone being a child with hypotonia and cp having to sit there and physically do it. I don't know many four year olds without physical issues that could stay focused for this period of time on something so boring but Miss T tried really hard and did her best. When the assessment was completed and correlated the speechie from specialist provider sat down with me to give me the results. What she said floored me. She said based on the results as a four year old that she would be illiterate, would never read for enjoyment, would never be able to hold down a job or live independently because of her speech and language problems. Devastated is too small a word for how I felt. How could my daughter who has no cognitive impairment possibly go through life without the necessary skills to communicate? She even told me that the only enjoyment she would get was from watching TV! (Miss T wouldn't care if we didn't have a TV, she watches less than an hour a week.) After the speechie gave me the results she said that they would no longer be able to support her therapy because of funding. Huge steps backwards of us. I just couldn't get my head around how hard life would be for her if she couldn't read or write especially as a person myself I love to read.

After I got over the shock of what she said and talked to our private speechie and took a long hard look at Miss T and who I felt she was. I knew in myself that she would have much more richness in her life than a life stuck in front of a television. I decided than that it was time to balk at the predictions. Honestly at four that is such a huge call to make. Miss T deserved to go forward whether a speechie with lack of insight thought so or not. I would love to take Miss T back to her now. She is the best in her class with sight words as she has almost of photographic memory for words. Reminds me of why mothers have instincts.

At the moment, along with Miss T's private speechie, we are exploring the possibility that she has an auditory processing disorder. I wouldn't surprise me to be honest. She does find following directions difficult and has difficulty working in a noisy environment. In some sense I am sad that it is another issue but in other ways I am accepting that this is her path, that the damage is already there and all I can do for her now is give her the best intervention that she needs at the time. Although I dislike labels, government departments love them and sometimes it may be a way to get what she needs. It gives a name for her problems in class, that she is not being badly behaved when she looses concentration but that she doesn't have the ability to process and differentiate the sounds that she is hearing. Maybe this step back will let us make leaps and bounds forward.

Daffodil Day

It's that time of year again to think about those affected by cancer. My daffodil day goes in tribute to my Mum and Dad and all those that I look after and their families. Dad, I miss you so much, leukemia won over your body but who you were to us lives on with us everyday. Mum, you have battled with more dignity than anyone I know. I wish I was half the person you are and could fight such a difficult battle with the amazing grace that you do. To all those that I look after, thank you for letting me share in your lives when you are going through something so difficult. There are many of you that I think about so often, thank you for making my job so much more than mere employment.

Between Two Eternities

"Between Two Eternities" by Rosemary Kay has to be one of my all time favourite books in the world. It is the true story about Saul who was born four months premature and his journey. It is so beautifully written and encompasses all the truth about the highs and lows of having a premature baby. I loved the way that it described the world of NICU from the baby's point of view. It changed the way I nursed and how I touched those in my care. I don't know if I am any more gentle than I was but maybe more thoughtful. It is one of those rare books that I have come across that even though I have read it several times it never ceases to to make an impact on me.

Wild Wednesday

The wind is howling and singing, the gum trees bend and lurch, the front door rattles, the dog cowers for cover, the tin roof crackles, the rain squalls on the windows and it is all so beautiful. So relentless, so uninhibited and raw. The weather was to wild to walk with the girls to school today so I have had the pleasure of their company. A day of baking in a toasty warm kitchen, making dolls clothes and school projects. I love these days that are to few and far between as I get caught up in the rush of life. Slowing down feels so good, why does it take an external force like the weather to make me do it?

Nearly Seven

Well as I keep being reminded (several times a day) it is coming up to that time of the year again for Miss T. Yes, that's right Birthday Time. Oh my she is so excited this year. If anyone asks how old she is she answers "I'm six but I'm seven August". Now that very important month is upon us Miss T is finding it very hard to contain herself.

What a milestone. We've passed infancy, we've passed toddler hood, we've passed being a pre-schooler and now we're entering the next phase. Part of me is sad that I've had to say goodbye to the baby and small child stages but I'm also excited to see what is to come and watch her blossom into the complex girl she is becoming. They change so fast. Sometimes I can't believe that the gangly girl that awkwardly tries to find a place on my lap was that tiny baby who I could hold in my hand. Time moves on, we move on and change and nothing seems to show that more to me than the growing up of my girls. I don't wish them not to grow up but I do wish sometimes I would take more care in appreciating who they are each day.

Just to Share

I'm always on the look out for good educational websites for the girls.

Rainforest Maths has to be one of my favourites. It is based on the curriculum in our state and is so easy to navigate and use. It suits all the three girls due to the different levels. Well worth a look for primary school children.

It's not always what you think

I just stumbled on this.

For some reason I was unable to leave a comment but there was a few things that got under my skin about the post. The author was trying to show how empathetic she was and really see someone for who they are despite their disability but then she goes on to label the person by their disability IE "27-year-old hydrocephalic". A DISABILITY IS SOMETHING SOMEBODY HAS IT IS NEVER WHO THEY ARE. (Sorry my pet hate). If you truly wish to see how incredible and phenomenal a person is than look past their diagnoses.

Parents place their children with disabilities in institutions do so out of complex circumstances. I don't think you can understand the decision making process around placing a child or adult with a severe impairment in an institution until you have had to make it yourself. I think it is extremely shortsighted to view the placing of a disabled child in an institution as purely a cruel and unthinking act by the parent/s.

The government and community at large play a substantial and critical role for parent's to feel supported with raising a child with a disability. Anyone who is raising a child with a disability knows of the considerable lack in resources, practical support, respite, childcare and schooling options, parental income support, community access ect. When the support is not there from government policy and action and the community as a whole some parents unfortunately have extremely limited options in caring for a child with high support needs. We can not pass judgements on these parents unless we have had to walk in their shoes and experience the significant difficulties in day to day life that they have had to face. But it is obvious that some just see parent's as making heartless decisions and don't look outside the box to see what has lead them to have to make the decision they have had to.

The one thing that I do agree with is that it is the parent's loss. Don't be so ignorant not to think that many of those parents have not had to deal with considerable grief over their situation. There is loss all around, for the child, the parents, the family and the wider community. Yes, it is very easy to sit back and judge these parent's for their decision but not so easy to go forward and campaign for a dramatic increase in funding and resources that are required for some children and adults with a severe disability to live with their families in their communities.

Hint of Summer

Even though it is still winter here, it in an unseasonably warm day. Just posted this photo of Miss E to remind me that the happy beach days are on the way. I love this photo of Miss E. I took it at Bribie Island in the middle of last summer just as she stood up from ducking under a wave. I love the true happiness of her smile and the fact that I can still see the water dripping from her cheeks. We are so lucky here to live near so many truly wonderful and special beaches.

Lucky Me

Miss E says several times a day "I love you much".

I have three pairs of small hands to hold.

The first thing Miss T does in the morning is give me a hug.

What more do I need!

Naming your baby

One of the most important and most stressfull things about having a baby can be choosing a name. We all have different tastes in names, some more out there than others but the one thing I have heard lately on more than one occasion is children with names that relate back to medical terminology. The two that stand out for me are:

Melena: which for the poor child in question actually means: "production of black feaces.... caused by bleeding into the bowel" (Encarta Dictionary). I have had to clean up melena on more than one occasion and it is not something I would wish on my worst enemy (won't go into details for anyone that has just eaten). You can imagine how I cringed on sports day with the Mum standing beside me yelling "Go Melena!" Pitty it's too late in the child's life to let the Mum know that perhaps she has made an error with naming her daughter.

Candida: which for this unfortunate child means: "fungus that causes yeast infection" (Encarta Dictionary). Oh dear me, it makes me speechless. I know the parents probably heard it somewhere and thought it sounded pretty but honestly there is nothing in the world pretty or cute about thrush.

Tip number one in naming your baby: look up the dictonary to find out the meaning of your selected name because every health professional will have a silent but sad giggle for your poor child that has a name like Melena (bloody poo) and Candida (thrush) when they call them in a waiting room.

Left Unsaid

I sit there with my babe in my arms. I'm trying hard to fall in love with her, honestly I am. Permisions been granted to be a mother for a short while, she is just on loan you must understand. I should take it drink it in be one with her. I just can't though, it torments me like nothing I have ever experienced. It's such hard work to relax and love. She is fragile and lovely, she is our babe we wished for so dearly but it is not meant to be like this. They're always there watching, judging, the power stuggle for control and ownership goes on with a turbulant undercurrent. I wish I could roar "but I'm her mother", but I don't I sit there meek and pathetic until it leaves a bitter taste in my mouth. There is a battle between being her advocate and being the "good family" so she gets treated kindly when we're not there.

We walk in the door one morning and the nursing staff melt away from us. They hide, give us a smile that says "I'm sorry". They pick up the phone and talk in hushed tones. What is this about, I think. My babe is still there behind the plastic, her numbers look good. The tech came yesterday to do her head ultrasound, just routine they all say, nothing to worry about, will only take ten minutes but the ultrasound takes close to an hour. My alarm bells should of gone off then. Babe's consultant is by our side within minutes. The words escape from his mouth that turn our lives around "her brain scan was not normal". What do you mean not normal I think. No this isn't happening to our babe. "She may never do this and never do that" he says "you will have to wait and see". I can't think straight. The other families are trying to be polite and pretend not to hear their own nightmares echoed in ours. I don't want to wait and see. I want the imposible, I want to know what lies ahead. I want to know if I can ever fall in mother love with her.

DH and I stay for the morning. Then we leave, work still goes on for DH. We walk into my mother and father's house. My sister and her family is there. My mother wants to know the results of her ultrasound. We tell them and leave with our two year old. My mother comes the next day and as if she has walked into my mind she says "its Ok I will love her with you no matter what lies ahead". Thats when I started to fall for my babe, when my mother's love for me and her grandaughter set me free from my fears for the future and the unkown with my premature babe.

Clueless

My two younger daughters had sports day today. It was in many ways a fun, happy day but unfortunately I witnessed terrible humiliation of a seven year old boy that was inflicted upon him by adults who were in the position of caring for him. This young boy has what I would call spunk, he is cheeky and has a fantastic sense of humor and also uses a self propelled wheelchair (with great dexterity I might add). The staff of the school made him race against the other children in his year level. Now I don't know how anyone in a wheelchair even an adult who uses a wheelchair on a permanent basis could keep up with hyped up seven year old boys on a drought stricken grass track. Honestly it was clueless, he was so terribly embarrassed when all the other children had finished there race and he was left there to battle the whole way to the end. Why he couldn't have had a head start for one and someone to help him push a little so he could still be part of the race without the humiliation of being left on the track finishing the race on his own I don't know. He had tears streaming down his face by the end of it and the teachers had the hide to ask what was wrong. Why is it so difficult to include students with disabilities while adapting the environment to level out the playing field. I though that was what inclusive education was about, making accommodations and modifications so students with disabilites could equally be part of the school community.

Eight Random Thoughts About Me

I've been tagged by Jacqui from Terrible Palsy for Eight Random Thoughts About Me:

1. I hate mashed potato to the point that I even hate mashing it up for the girls - but of course it would be one of their favourite foods.





2. I don't drive, by choice - the rest of the world is a bit safer because of it too.





3. I spend way to much time playing WEBoggle. I am totally addicted.




4. I still haven't found anything that I'm talented at (sad I know).




5. I drink way, way to much coffee.




6. I hate confrontation and will do anything in my power to avoid it (not always the best course of action).




7. I adore chocolate coated ginger more than any other food in the whole world.



8. The best smell in the world is double choc chip cookies baking in the oven on a rainy day.

I know I'm suppose to tag 8 other bloggers, but I'm afraid I'm only new to the whole blog deal. So I don't think I will be able to tag 8 bloggers but I will tag Word Game Guy who is also new to the blog world and because I adore his game.

Resentment

I have recently read an article in a small Australian Magazine about natural parenting in NICU and SCN. The article describe this women's own journey with a son born at 34 weeks who had a 10 day SCN stay. At the end of the article she gives a list of suggestions to support parents with babies in NICU/SCN. I fully understand that for this family those ten days were extremely difficult but for some reason I have this bitter feeling of resentment that the suggestions glossed over the realities for families that have babies that are not "feeders and growers" whose stay extends well past ten days into weeks and months with long term implications. The information and support that you require and are practical for 10 days are very different to a long term stay. What I found exceptionally difficult was that NO mention of some of the more serious sides of prematurity eg: viability, morbidity, resuscitation, IVH, or long term health implications. Why are these issues forgotten about? Why is it not important to support families with information on these topics that are difficult but so important when faced with these issues? If you were going to give suggestions to support parents of premature babies these issues need to be and should be discussed.

Boring

Only a nine year old would find the view from the Noosa National Park "boring". I think it is beautiful and could look at it forever. I guess beauty is in the eye of the beholder...

Please

To the daughter,

Please listen to your mother. She has made an informed decision. She has weighed up the benefits against the negative side effects. She has made a choice she can live with. Please remember that she loves you dearly but this is her body and her decision. Please don't be so angry with her that is permeates the air and your whole being. Please turn your IPod off when the nurse is trying to discuss your Mother's chemotherapy treatment with you both (come on your in your 30's now, it's time to grow up a bit). If you can't handle the environment and the treatment please walk out. Please don't stare daggers at your Mother when she is having her first treatment instead please see her bravery and her need for you just to hold her hand and just be with her. Please see that not everyone can base their faith in herbs and alternative medicine. Please, we understand that you don't agree with chemotherapy but please try and see we are trying to slow down the proliferation of your Mother's cancer and control your Mother's symptoms. Please see that our motive is not to harm your Mother but to help her. Please don't spend the limited time you have left with your Mother wrapped up with anger against her. Please be angry with the cancer - not your Mother.

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.