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.