tag:blogger.com,1999:blog-66202084085763355312024-03-13T21:15:43.465+10:00One Step Forward 2 Steps Backlittlemahttp://www.blogger.com/profile/09628160506080600347noreply@blogger.comBlogger35125tag:blogger.com,1999:blog-6620208408576335531.post-91947282905223393222007-10-09T09:24:00.000+10:002007-10-09T14:04:29.483+10:00Fear<div align="justify"><span style="font-size:130%;">Why did I never see what was really <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">in front</span> of me</span>? <span style="font-size:130%;">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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">OK</span> 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, <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">in fact</span> those words I least wanted to hear were uttered "intellectual impairment" by the developmental <span class="blsp-spelling-error" id="SPELLING_ERROR_3">pead</span>. </span></div><br /><div align="justify"><span style="font-size:130%;">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. </span></div><div align="justify"><span style="font-size:130%;"></span></div><div align="justify"><span style="font-size:130%;">What is it that I fear so much? I fear the sadness of that comes with another loss of some of the hopes for <span class="blsp-spelling-corrected" id="SPELLING_ERROR_4">normality</span> for my little girl. I fear the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_5">venerability</span> that will <span class="blsp-spelling-corrected" id="SPELLING_ERROR_6">inevitably</span> come. That Miss T will be at the mercy of the general community. <span class="blsp-spelling-corrected" id="SPELLING_ERROR_7">At</span> times when she gets older, that there will be those that understand and are kind and <span class="blsp-spelling-corrected" id="SPELLING_ERROR_8">accommodating</span> but on the other hand there will be those that will use and manipulate her impairments for their own <span class="blsp-spelling-corrected" id="SPELLING_ERROR_9">benefit</span>. I fear the the whole future for her now more than ever. I fear explaining it all to her. </span></div><div align="justify"><span style="font-size:130%;"></span></div><div align="justify"><span style="font-size:130%;"></span> </div><div align="justify"><span style="font-size:130%;">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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_10">fuels</span> 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.</span></div>littlemahttp://www.blogger.com/profile/09628160506080600347noreply@blogger.com8tag:blogger.com,1999:blog-6620208408576335531.post-40763163826585366972007-09-30T16:12:00.000+10:002007-09-30T16:40:21.412+10:00Grumpy<div align="justify">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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">truly</span> 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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">annoying</span> 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.</div><br /><br /><br /><div align="justify">I found it so sad that children doing what they do best - enjoying themselves and playing are looked on so <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">disdainfully</span> 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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_3">remember</span> 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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_4">carers</span> who are looking after them. If children can not be children at a park by the beach during school holidays - where can they?</div>littlemahttp://www.blogger.com/profile/09628160506080600347noreply@blogger.com0tag:blogger.com,1999:blog-6620208408576335531.post-88539884683156624652007-09-18T13:35:00.000+10:002007-09-18T14:03:50.233+10:00When?<div align="justify">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? </div><br /><div align="justify">Miss T has had six appointments in the last week. I kind of wonder though in the middle of the night does it <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">truly</span> 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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">stumble</span> upon that doctor/therapist/teacher who can fix her. I sounds <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">ridiculous</span> even to me to read it back because I know there is no cure for <span class="blsp-spelling-error" id="SPELLING_ERROR_3">PVL</span>. 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 - <span class="blsp-spelling-corrected" id="SPELLING_ERROR_4">normalcy</span>, for the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_5">hard parts</span> of Miss T's life to finish? </div><div align="justify"> </div><div align="justify">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 <span class="blsp-spelling-error" id="SPELLING_ERROR_6">IVH</span>, the <span class="blsp-spelling-error" id="SPELLING_ERROR_7">PVL</span>, the ataxic <span class="blsp-spelling-error" id="SPELLING_ERROR_8">CP</span> 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? </div>littlemahttp://www.blogger.com/profile/09628160506080600347noreply@blogger.com3tag:blogger.com,1999:blog-6620208408576335531.post-83715821330516804782007-09-05T10:08:00.000+10:002007-09-05T10:22:11.916+10:00The Nevers<div align="justify"><span style="font-size:130%;">We've had our fair share of "<span class="blsp-spelling-error" id="SPELLING_ERROR_0">nevers</span>" while parenting Miss T. Right from her <span class="blsp-spelling-error" id="SPELLING_ERROR_1">IVH</span> and diagnoses and through different therapists. She'll never do this and she'll never do that. <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">Hm</span>, really? Do I really want to propose to any of my children a pathway that is full of boxed in, <span class="blsp-spelling-corrected" id="SPELLING_ERROR_3">labeled</span> predictions? </span></div><span style="font-size:130%;"></span><br /><div align="justify"><span style="font-size:130%;">Last night on the <a href="http://www.abc.net.au/7.30/content/2007/s2023844.htm">7.30 report </a>on the ABC there was a fantastic, <span class="blsp-spelling-corrected" id="SPELLING_ERROR_4">hopeful</span> story of Caitlin <span class="blsp-spelling-error" id="SPELLING_ERROR_5">McOmish</span>. 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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_6">seizures</span> 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 <span class="blsp-spelling-error" id="SPELLING_ERROR_7">neuroscientist</span>. Her research involves looking at <span class="blsp-spelling-corrected" id="SPELLING_ERROR_8">environmental</span> enrichment and its effect on brain disorders. Well worth a look at.</span></div><span style="font-size:130%;"></span><br /><div align="justify"><span style="font-size:130%;">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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_9">until</span> then I will give Miss T all the opportunities in the world to be whoever she can. </span></div>littlemahttp://www.blogger.com/profile/09628160506080600347noreply@blogger.com0tag:blogger.com,1999:blog-6620208408576335531.post-57823076014639035032007-09-01T15:08:00.000+10:002007-09-02T18:13:21.142+10:00Father's Day<div align="justify">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. </div><br /><br /><br />I spent today with other people's Fathers but my own was in my thoughts all day.littlemahttp://www.blogger.com/profile/09628160506080600347noreply@blogger.com0tag:blogger.com,1999:blog-6620208408576335531.post-22502426391094339832007-08-30T20:02:00.000+10:002007-08-30T20:27:36.207+10:00Letting Go<div align="justify"><span style="font-size:130%;">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. </span></div><span style="font-size:130%;"></span><div align="justify"><br /><span style="font-size:130%;">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. </span></div><div align="justify"><span style="font-size:130%;"> </span></div>littlemahttp://www.blogger.com/profile/09628160506080600347noreply@blogger.com0tag:blogger.com,1999:blog-6620208408576335531.post-16675211853048288592007-08-26T08:33:00.000+10:002007-08-26T08:38:31.590+10:00Peace<div align="center"><span style="font-size:130%;color:#33ccff;">Peace:</span></div><br /><div align="center"><span style="font-size:130%;color:#33ccff;">It does not mean to be in a place</span></div><br /><div align="center"><span style="font-size:130%;color:#33ccff;">where there is no noise, trouble or hard work.</span></div><br /><div align="center"><span style="font-size:130%;color:#33ccff;">It means to be in the midst of those things</span></div><br /><div align="center"><span style="font-size:130%;color:#33ccff;">and still be clam in your heart. - Unknown</span></div><br /><div align="center"><span style="font-size:130%;color:#33ccff;"></span></div><br /><div align="justify"><span style="font-size:130%;color:#000000;">To all those parenting children with disabilities this is my wish for you. </span></div><br /><div align="center"><span style="font-size:130%;color:#33ccff;"></span></div><br /><div align="justify"><span style="font-size:130%;color:#000000;"></span></div>littlemahttp://www.blogger.com/profile/09628160506080600347noreply@blogger.com0tag:blogger.com,1999:blog-6620208408576335531.post-84751662326663107372007-08-25T17:50:00.000+10:002007-08-26T08:05:15.228+10:00But Wait....There's More<div align="justify"><span style="font-size:130%;">Miss T's speech and language problems have always been her major defining symptom of her ataxic <span class="blsp-spelling-error" id="SPELLING_ERROR_0">cp</span>. After diagnoses at the age of two we were referred on to a specialist provider for <span class="blsp-spelling-error" id="SPELLING_ERROR_1">cp</span>. 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 <span class="blsp-spelling-error" id="SPELLING_ERROR_2">speechie</span> 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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_3">empowerment</span> 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". </span></div><div align="justify"><span style="font-size:130%;"></span></div><div align="justify"><span style="font-size:130%;"></span> </div><div align="justify"><span style="font-size:130%;">Back to the <span class="blsp-spelling-error" id="SPELLING_ERROR_4">cp</span> specialist provider. The <span class="blsp-spelling-error" id="SPELLING_ERROR_5">speechie</span> 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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_6">gruelling</span> as an adult to sit and watch let alone being a child with <span class="blsp-spelling-error" id="SPELLING_ERROR_7">hypotonia</span> and <span class="blsp-spelling-error" id="SPELLING_ERROR_8">cp</span> having to sit there and physically do it. I don't know many four year <span class="blsp-spelling-error" id="SPELLING_ERROR_9">olds</span> 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 <span class="blsp-spelling-error" id="SPELLING_ERROR_10">speechie</span> 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. <span class="blsp-spelling-corrected" id="SPELLING_ERROR_11">Devastated</span> 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 <span class="blsp-spelling-error" id="SPELLING_ERROR_12">speechie</span> 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. </span></div><div align="justify"><span style="font-size:130%;"></span></div><div align="justify"><span style="font-size:130%;"></span> </div><div align="justify"><span style="font-size:130%;"></span> </div><div align="justify"><span style="font-size:130%;">After I got over the shock of what she said and talked to our private <span class="blsp-spelling-error" id="SPELLING_ERROR_13">speechie</span> 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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_14">in front</span> 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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_15">whether</span> a <span class="blsp-spelling-error" id="SPELLING_ERROR_16">speechie</span> 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. </span></div><div align="justify"><span style="font-size:130%;"></span></div><div align="justify"><span style="font-size:130%;"></span> </div><div align="justify"><span style="font-size:130%;"></span> </div><div align="justify"><span style="font-size:130%;">At the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_17">moment</span>, along with Miss T's private <span class="blsp-spelling-error" id="SPELLING_ERROR_18">speechie</span>, we are exploring the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_19">possibility</span> that she has an auditory processing disorder. I wouldn't <span class="blsp-spelling-corrected" id="SPELLING_ERROR_20">surprise</span> 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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_21">labels</span>, 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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_22">differentiate</span> the sounds that she is hearing. Maybe this step back will let us make leaps and bounds forward. </span></div>littlemahttp://www.blogger.com/profile/09628160506080600347noreply@blogger.com2tag:blogger.com,1999:blog-6620208408576335531.post-20720804957859319782007-08-24T17:48:00.001+10:002007-08-24T18:03:48.333+10:00Daffodil Day<a href="http://bp3.blogger.com/_P-ZrU14rSwc/Rs6OPmCds3I/AAAAAAAAABE/ivnGxVoRsX0/s1600-h/daffodilday_logo.jpg"><img id="BLOGGER_PHOTO_ID_5102171826417415026" style="DISPLAY: block; MARGIN: 0px auto 10px; CURSOR: hand; TEXT-ALIGN: center" alt="" src="http://bp3.blogger.com/_P-ZrU14rSwc/Rs6OPmCds3I/AAAAAAAAABE/ivnGxVoRsX0/s320/daffodilday_logo.jpg" border="0" /></a><br /><div align="justify">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 <span class="blsp-spelling-error" id="SPELLING_ERROR_0">person</span> 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. </div>littlemahttp://www.blogger.com/profile/09628160506080600347noreply@blogger.com0tag:blogger.com,1999:blog-6620208408576335531.post-89653599272615415592007-08-22T17:39:00.000+10:002007-08-22T17:48:12.403+10:00Between Two Eternities<div align="justify"><span style="font-size:130%;">"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 <span class="blsp-spelling-error" id="SPELLING_ERROR_0">NICU</span> 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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">thoughtful</span>. 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. </span></div>littlemahttp://www.blogger.com/profile/09628160506080600347noreply@blogger.com0tag:blogger.com,1999:blog-6620208408576335531.post-51107176856814409432007-08-22T14:58:00.000+10:002007-08-22T15:12:31.999+10:00Wild Wednesday<div align="justify"><span style="font-size:130%;">The wind is howling and singing, the gum trees bend and lurch, the front door rattles, the dog cowers for cover, the tin roof <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">crackles</span>, the rain <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">squalls</span> on the windows and it is all so beautiful. So relentless, so <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">uninhibited</span> and raw. The weather was to wild to walk with the girls to school today so I have had the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_3">pleasure</span> 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? </span></div>littlemahttp://www.blogger.com/profile/09628160506080600347noreply@blogger.com0tag:blogger.com,1999:blog-6620208408576335531.post-17936521143968054392007-08-17T16:43:00.000+10:002007-08-18T18:31:09.019+10:00Nearly Seven<div align="justify"><span style="font-size:130%;">Well as I keep being <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">reminded</span> (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. </span></div><div align="justify"><span style="font-size:130%;"></span></div><div align="justify"><span style="font-size:130%;">What a milestone. We've passed infancy, we've passed <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">toddler hood</span>, we've passed being a <span class="blsp-spelling-error" id="SPELLING_ERROR_2">pre</span>-<span class="blsp-spelling-error" id="SPELLING_ERROR_3">schooler</span> 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 <span class="blsp-spelling-error" id="SPELLING_ERROR_4">gangly</span> girl that awkwardly <span class="blsp-spelling-error" id="SPELLING_ERROR_5">tries</span> 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. </span></div>littlemahttp://www.blogger.com/profile/09628160506080600347noreply@blogger.com0tag:blogger.com,1999:blog-6620208408576335531.post-44022179828471074622007-08-17T16:37:00.000+10:002007-08-18T18:15:12.662+10:00Just to Share<span style="font-size:130%;">I'm always on the look out for good educational websites for the girls. </span><br /><span style="font-size:130%;"></span><br /><span style="font-size:130%;"><a href="http://www.teachers.ash.org.au/jeather/rainforestmaths/RAINFORESTmaths.html"><span class="blsp-spelling-error" id="SPELLING_ERROR_0">Rainforest</span> Maths</a> has to be one of my favourites. It is based on the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">curriculum</span> 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. </span>littlemahttp://www.blogger.com/profile/09628160506080600347noreply@blogger.com0tag:blogger.com,1999:blog-6620208408576335531.post-16454927562720809582007-08-14T09:30:00.000+10:002007-08-14T10:20:23.296+10:00It's not always what you think<div align="justify"><span style="font-size:130%;">I just stumbled on <a href="http://justme30453.blogspot.com/2007/08/speaking-of-which.html">this</a>. </span></div><br /><div align="justify"><span style="font-size:130%;"></span></div><br /><div align="justify"><span style="font-size:130%;">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.</span></div><br /><div align="justify"><span style="font-size:130%;"></span></div><br /><div align="justify"><span style="font-size:130%;">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. </span></div><br /><div align="justify"><span style="font-size:130%;"></span></div><br /><div align="justify"><span style="font-size:130%;">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. </span></div><br /><div align="justify"><span style="font-size:130%;"></span></div><br /><div align="justify"><span style="font-size:130%;">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. </span></div><br /><div align="justify"><span style="font-size:130%;"></span></div><br /><div align="justify"><span style="font-size:130%;"></span></div>littlemahttp://www.blogger.com/profile/09628160506080600347noreply@blogger.com7tag:blogger.com,1999:blog-6620208408576335531.post-22621311800471641802007-08-11T15:34:00.000+10:002007-08-11T15:43:04.920+10:00Hint of Summer<div align="justify"></div><br /><div align="justify"><a href="http://bp3.blogger.com/_P-ZrU14rSwc/Rr1Km36JIXI/AAAAAAAAAAs/GowmtH1W9UE/s1600-h/IMG_0001.jpg"><img id="BLOGGER_PHOTO_ID_5097312384956572018" style="DISPLAY: block; MARGIN: 0px auto 10px; CURSOR: hand; TEXT-ALIGN: center" alt="" src="http://bp3.blogger.com/_P-ZrU14rSwc/Rr1Km36JIXI/AAAAAAAAAAs/GowmtH1W9UE/s320/IMG_0001.jpg" border="0" /></a><br />Even though it is still winter here, it in an <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">unseasonably</span> 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 <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Bribie</span> 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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">truly</span> wonderful and special beaches. </div>littlemahttp://www.blogger.com/profile/09628160506080600347noreply@blogger.com0tag:blogger.com,1999:blog-6620208408576335531.post-73620376534044180762007-08-10T13:53:00.000+10:002007-08-10T13:56:25.499+10:00Lucky Me<span style="font-size:130%;">Miss E says several times a day "I love you much". </span><br /><span style="font-size:130%;"></span><br /><span style="font-size:130%;">I have three pairs of small hands to hold.</span><br /><span style="font-size:130%;"></span><br /><span style="font-size:130%;">The first thing Miss T does in the morning is give me a hug.</span><br /><span style="font-size:130%;"></span><br /><span style="font-size:130%;">What more do I need! </span>littlemahttp://www.blogger.com/profile/09628160506080600347noreply@blogger.com0tag:blogger.com,1999:blog-6620208408576335531.post-31454243692673843542007-08-07T10:39:00.000+10:002007-08-07T11:02:47.404+10:00Naming your baby<div align="justify"><span style="font-size:130%;">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:</span></div><br /><div align="justify"><span style="font-size:130%;"></span></div><br /><div align="justify"><span style="font-size:130%;">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.</span></div><br /><div align="justify"><span style="font-size:130%;"></span></div><br /><div align="justify"><span style="font-size:130%;">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. </span></div><br /><div align="justify"><span style="font-size:130%;"></span></div><br /><div align="justify"><span style="font-size:130%;"></span></div><br /><div align="justify"><span style="font-size:130%;">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. </span></div><br /><div align="justify"><span style="font-size:130%;"></span></div>littlemahttp://www.blogger.com/profile/09628160506080600347noreply@blogger.com0tag:blogger.com,1999:blog-6620208408576335531.post-26117524705859198882007-07-31T17:04:00.000+10:002007-07-31T17:45:37.870+10:00Left Unsaid<div align="justify"><span style="font-size:130%;">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. </span><span style="font-size:130%;">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. </span></div><br /><div align="justify"><span style="font-size:130%;"></span></div><br /><div align="justify"><span style="font-size:130%;">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. </span></div><br /><div align="justify"><span style="font-size:130%;"></span></div><br /><div align="justify"><span style="font-size:130%;">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. </span></div>littlemahttp://www.blogger.com/profile/09628160506080600347noreply@blogger.com4tag:blogger.com,1999:blog-6620208408576335531.post-60787501280746172002007-07-24T16:28:00.000+10:002007-07-24T16:55:27.844+10:00Clueless<div align="justify">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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">cheeky</span> 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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">embarrassed</span> 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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">streaming</span> 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. </div>littlemahttp://www.blogger.com/profile/09628160506080600347noreply@blogger.com1tag:blogger.com,1999:blog-6620208408576335531.post-90549916405079717542007-07-18T14:38:00.000+10:002007-07-18T16:14:46.882+10:00Eight Random Thoughts About Me<span style="font-size:130%;">I've been <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">tagged</span> by Jacqui from Terrible Palsy for Eight <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">Random</span> Thoughts About Me:</span><br /><br /><ol><br /><br /><br /><li><span style="font-size:130%;">I hate mashed <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">potato</span> to the point that I even hate mashing it up for the girls - but of course it would be one of their favourite foods.</span></li><br /><br /><br /><br /><li><span style="font-size:130%;">I don't drive, by choice - the rest of the world is a bit safer because of it too. </span></li><br /><br /><br /><br /><li><span style="font-size:130%;">I spend way to much time playing <a href="http://weboggle.shakworks.com/"><span class="blsp-spelling-error" id="SPELLING_ERROR_3">WEBoggle</span></a>. I am totally <span class="blsp-spelling-corrected" id="SPELLING_ERROR_4">addicted</span>.</span></li><br /><br /><br /><li><span style="font-size:130%;">I still haven't found anything that I'm talented at (sad I know).</span></li><br /><br /><br /><li><span style="font-size:130%;">I drink way, way to much coffee.</span></li><br /><br /><br /><li><span style="font-size:130%;">I hate <span class="blsp-spelling-corrected" id="SPELLING_ERROR_5">confrontation</span> and will do anything in my power to avoid it (not always the best course of action).</span></li><br /><br /><br /><li><span style="font-size:130%;">I adore <span class="blsp-spelling-corrected" id="SPELLING_ERROR_6">chocolate</span> coated ginger more than any other food in the whole world.</span></li><br /><br /><li><span style="font-size:130%;">The best smell in the world is double <span class="blsp-spelling-error" id="SPELLING_ERROR_7">choc</span> chip cookies baking in the oven on a rainy day.</span></li></ol><br /><p><span style="font-size:130%;">I know I'm <span class="blsp-spelling-corrected" id="SPELLING_ERROR_8">suppose</span> to tag 8 other <span class="blsp-spelling-error" id="SPELLING_ERROR_9">bloggers</span>, 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 <span class="blsp-spelling-error" id="SPELLING_ERROR_10">bloggers</span> but I will tag </span><span style="font-size:130%;"><a href="http://wordgameguy.blogspot.com/">Word Game Guy</a> who is also new to the blog world and because I adore his game. </span></p><br /><p></p><br /><br /><p><span style="font-size:130%;"></span></p>littlemahttp://www.blogger.com/profile/09628160506080600347noreply@blogger.com0tag:blogger.com,1999:blog-6620208408576335531.post-77760699632094468442007-07-10T13:50:00.000+10:002007-07-11T11:07:33.610+10:00Resentment<div align="justify">I have recently read an article in a small Australian Magazine about natural parenting in <span class="blsp-spelling-error" id="SPELLING_ERROR_0">NICU</span> and <span class="blsp-spelling-error" id="SPELLING_ERROR_1">SCN</span>. The article describe this women's own journey with a son born at 34 weeks who had a 10 day <span class="blsp-spelling-error" id="SPELLING_ERROR_2">SCN</span> stay. At the end of the article she gives a list of suggestions to support parents with babies in <span class="blsp-spelling-error" id="SPELLING_ERROR_3">NICU</span>/<span class="blsp-spelling-error" id="SPELLING_ERROR_4">SCN</span>. 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 <span class="blsp-spelling-error" id="SPELLING_ERROR_5">eg</span>: viability, morbidity, resuscitation, <span class="blsp-spelling-error" id="SPELLING_ERROR_6">IVH</span>, 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. </div>littlemahttp://www.blogger.com/profile/09628160506080600347noreply@blogger.com5tag:blogger.com,1999:blog-6620208408576335531.post-76884175555834405332007-07-05T10:02:00.001+10:002007-07-05T10:06:32.910+10:00Boring<div align="justify"><a href="http://bp2.blogger.com/_P-ZrU14rSwc/Row1f3-1naI/AAAAAAAAAAk/TWBcd6dNWKQ/s1600-h/IMG_0001.jpg"><img id="BLOGGER_PHOTO_ID_5083496901114174882" style="DISPLAY: block; MARGIN: 0px auto 10px; CURSOR: hand; TEXT-ALIGN: center" alt="" src="http://bp2.blogger.com/_P-ZrU14rSwc/Row1f3-1naI/AAAAAAAAAAk/TWBcd6dNWKQ/s320/IMG_0001.jpg" border="0" /></a> 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...<br /><div align="justify"></div></div>littlemahttp://www.blogger.com/profile/09628160506080600347noreply@blogger.com0tag:blogger.com,1999:blog-6620208408576335531.post-27368691007244395112007-07-03T10:27:00.000+10:002007-07-03T11:04:55.787+10:00Please<div align="justify"><span style="font-size:130%;">To the daughter,</span></div><div align="justify"><span style="font-size:130%;"></span></div><div align="justify"><span style="font-size:130%;">Please listen to your mother. She has made an informed decision. She has weighed up the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">benefits</span> against the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">negative</span> 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 <span class="blsp-spelling-error" id="SPELLING_ERROR_2">IPod</span> 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. </span></div><div align="justify"><span style="font-size:130%;"></span></div><div align="justify"><span style="font-size:130%;"></span></div><div align="justify"></div><div align="justify"><span style="font-size:130%;"></span></div>littlemahttp://www.blogger.com/profile/09628160506080600347noreply@blogger.com0tag:blogger.com,1999:blog-6620208408576335531.post-75452608122378836032007-06-27T18:23:00.000+10:002007-06-27T18:36:25.442+10:00Link to Heaven<div align="justify">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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">Internet</span> they have a <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">solution</span>...... email. I have repeated requests to email this and that to Grandad in <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">heaven</span>. 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. </div>littlemahttp://www.blogger.com/profile/09628160506080600347noreply@blogger.com0tag:blogger.com,1999:blog-6620208408576335531.post-76582021954944848732007-06-26T09:47:00.000+10:002007-06-26T10:11:10.307+10:00Haunting<div align="justify"><span style="font-size:130%;">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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">there</span></span><span style="font-size:130%;"> 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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">situation</span>. 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.</span></div>littlemahttp://www.blogger.com/profile/09628160506080600347noreply@blogger.com1