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.