tag:blogger.com,1999:blog-12321675834528580952024-02-03T01:46:00.727+02:00The Good LifeUnknownnoreply@blogger.comBlogger192125tag:blogger.com,1999:blog-1232167583452858095.post-32311676495312920372011-11-07T16:52:00.000+02:002011-11-07T16:52:32.733+02:00Special Request<span style="font-family: Verdana, sans-serif;">It is for a very special reason that I am proverbially "shooshing the dust" off this little precious blog of mine - and the reason is little Jude, a newborn baby boy born to a loving mom and dad.</span><br />
<br />
<span style="font-family: Verdana, sans-serif;">Jude was born with Down syndrome, diagnosed shortly after birth. I have spoken to his mom and dad about how beautiful he is and that everything will be ok (as we know it to be in our wonderful community, no?).</span><br />
<br />
<span style="font-family: Verdana, sans-serif;">Jude is facing a few challenges though that I would appreciate any feedback or assistance with from this wonderful online community that I know supported, loved, and shared with me when it came to Malakai. </span><br />
<br />
<span style="font-family: Verdana, sans-serif;">Jude has heart issues, as well as cataracts on his eyes and hearing challenges. Moms who have been here and done this, please can you email me directly or comment on the blog with your thoughts, tips, inspiration, ideas, links etc.?</span><br />
<br />
<span style="font-family: Verdana, sans-serif;">It would mean the world to this mom and dad - they need a little upliftment and Jude needs everybody's well wishes and prayers.</span><br />
<br />
<span style="font-family: Verdana, sans-serif;">Thank you so much moms and dads - you rock (as always!).</span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1232167583452858095.post-3559843879149905032011-07-21T21:16:00.001+02:002011-07-21T21:18:16.041+02:00Indefinite Pause<div class="MsoNormal" style="margin: 0cm 0cm 10pt;"><span style="font-family: Calibri;">It is with great love in my heart that I push the pause button for an indefinite period on this blog.<span style="mso-spacerun: yes;"> </span>My beautiful son is about to turn three years old, and as if on cue, it has become harder and harder for me to find the time or the subject matter to put on this blog. I have for a while felt too busy to get there, and too stifled by the need to write only about parenting and Down syndrome… I just feel that our lives are about so much more than that – so much more… <o:p></o:p></span></div><br />
<div class="MsoNormal" style="margin: 0cm 0cm 10pt;"><span style="font-family: Calibri;">If I had known three years ago the amazing journey that my son, Malakai Steven William Stow, would bring our family on, simply by virtue of his birth and the revelation of his additional chromosome, I would never have believed it!<o:p></o:p></span></div><br />
<div class="MsoNormal" style="margin: 0cm 0cm 10pt;"><span style="font-family: Calibri;">It was a day filled with such pain, confusion and a raw kind of truth… But it was just the first step along a journey that has stripped us bare, down to the truth of ourselves, in the search of our most basic needs, while at the same time gently covering our nakedness with layer upon layer of love, beauty, generosity, perfection, and grace. <o:p></o:p></span></div><br />
<div class="MsoNormal" style="margin: 0cm 0cm 10pt;"><span style="font-family: Calibri;">I cannot even begin to put into words the sheer magnitude of the past three years – and so, I am going to try, in a new blogmoir… half blog, half memoir. I don’t even know what it’s going to be called or when it’s going to start – but I will certainly post it here.<o:p></o:p></span></div><br />
<div class="MsoNormal" style="margin: 0cm 0cm 10pt;"><span style="font-family: Calibri;">In the meantime, thank you to everyone who has followed our journey and who took the time to comment, share and give so readily of their love. This blog and the global community I found myself in was certainly one my biggest saviours in the early days and a big reason for many smiles over the last three years.<o:p></o:p></span></div><br />
<div class="MsoNormal" style="margin: 0cm 0cm 10pt;"><span style="font-family: Calibri;">So, here is an indefinite goodbye and take care. XXX</span></div><div class="MsoNormal" style="margin: 0cm 0cm 10pt;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2s-GYnW0I5Jm3oj_GIX9E-N0lnPCLiMDnqu9wbmvnPjEzqU9-sZYUZQnfqRngC_nUhFW19gKedK8ABSiSRVixOQytWegFtTKlezgMq1c00rCgkrKCqwKDRX6KPibE1dhpBAUk8Yx9gjc0/s1600/IMG_1607.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2s-GYnW0I5Jm3oj_GIX9E-N0lnPCLiMDnqu9wbmvnPjEzqU9-sZYUZQnfqRngC_nUhFW19gKedK8ABSiSRVixOQytWegFtTKlezgMq1c00rCgkrKCqwKDRX6KPibE1dhpBAUk8Yx9gjc0/s400/IMG_1607.JPG" width="400" /></a></div><div class="MsoNormal" style="margin: 0cm 0cm 10pt;"><br />
</div>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-1232167583452858095.post-86463688362167638712011-07-01T10:33:00.002+02:002011-07-01T10:44:45.062+02:00i. can. talk.<span style="font-family: Verdana, sans-serif;">I wanted to mark this day - the 1st of July - as one of great importance to me. And it is all a rather long story... so sorry in advance!</span><br />
<br />
<span style="font-family: Verdana;">As a child, the moment I found my voice and words I ran with it. My mother often tells me that she always knew where I was and what I was doing because I talked <em>constantly</em>. I talked to myself, my dolls, my dogs, even to flowers and stones and insects... Everything was alive in my mind, there was no difference between talking to my sister, my dog, or a stone - I shared my fantasies and thoughts with everything that crossed my path. </span><br />
<br />
<span style="font-family: Verdana;">Words were very important to me and this love for words never faded. As I grew older, it became a passion for reading, then a passion for writing. And when I had nothing to write about, I would find inspirational writing and just re-write it in one of my countless notebooks. Just for the feeling that I got when putting pen to paper. Just for the feeling I got when words were strung together in such a way that it made my mind stop and my heart open up.</span><br />
<br />
<span style="font-family: Verdana;">Then Malakai was born and we went through our process of grieving, acceptance and eventually the daily celebration as he continually showed us just how amazing he actually was.</span><br />
<br />
<span style="font-family: Verdana;">But Malakai was very quiet verbally. In fact, he was so silent that he only really cried for the first time at 3 months and only started babbling well after his first birthday. I knew this would be the case, and I always wondered how I would teach my son a love of words, like I had, when he wasn't able to use them. It broke my heart.</span><br />
<br />
<span style="font-family: Verdana;">But we started early - with signing and with literacy (using the Love & Learning programme). The research was clear on signing and looking a bit deeper into the literacy programme revealed how children who are visual learners learn language not by hearing it, but by <em>seeing</em> it (through sign and letters).</span><br />
<br />
<span style="font-family: Verdana;">By 18 months Malakai was signing 30 words regularly and had about 150 signs that he could do when prompted. At 2 years old, Malakai could sight read about 20 words as well. And from the day he was born, he has had an absolute love of books. He will choose to read above all else - and so, I knew that he had my love of words as well... but he expressed it in his own way.</span><br />
<br />
<span style="font-family: Verdana;">So, today when my son said the word 'bus' as clear as day, pronouncing all three letters clearly, and he could repeat the word at will when I asked him to... I just beamed from ear to ear. My son is talking. He is saying whole words clearly from beginning to end. He is talking.</span><br />
<br />
<span style="font-family: Verdana;">I couldn't help but cry after I dropped him off at creche this morning, after singing <em>the wheels on the bus</em> all the way there in the car. My boy has been talking with his hands and gestures for almost three years and today we've opened the door to verbal speech just a crack, letting the light through and filling us with possibilities.</span>Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-1232167583452858095.post-70425439430138636332011-06-13T11:00:00.000+02:002011-06-13T11:00:43.546+02:00Happy birthday Dada<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">To my husband - we love you dearly. You are so precious and special to us, we love having you in our lives and hope that you know how needed and loved you are. XXX</span><br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYd5onrJuyVFrWd9RSrWqKiNOF0KLWU_WL3mRsZJG9rVEYNg3IFomcmO7GeaWHpzdW44tbZ1WMIaMxhhBKu7UJl5ejUNHFKoW92IJth2EXH8KdFhjwN_-HdQyBEx2eH5ljja5rreRJmsvf/s1600/DarrylBday+copy.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="285" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYd5onrJuyVFrWd9RSrWqKiNOF0KLWU_WL3mRsZJG9rVEYNg3IFomcmO7GeaWHpzdW44tbZ1WMIaMxhhBKu7UJl5ejUNHFKoW92IJth2EXH8KdFhjwN_-HdQyBEx2eH5ljja5rreRJmsvf/s400/DarrylBday+copy.jpg" t8="true" width="400" /></a></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1232167583452858095.post-42892053791785794412011-05-30T15:54:00.002+02:002011-05-30T15:54:37.393+02:00Shaving cream anyone?<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Now... anyone who knows Malakai knows that he's a bit of sensory-junky. He just loves shaving cream... uuummm... really really loves it. As for Harlan, well, he's keen but not so much! LOL!</span><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgR8ZZrAESkAAAe16qixmdTgAOFbVV_sogt2htNagpqY9K_wBxOgODvJqFr3grAyssgmdRp9PSNS5Ag5LybtFQ8-Hlvcpd65-jkj3iBLpITUlGP3hAmDARv82GsdOuZkuq0SJLf76wwwiF/s1600/31.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgR8ZZrAESkAAAe16qixmdTgAOFbVV_sogt2htNagpqY9K_wBxOgODvJqFr3grAyssgmdRp9PSNS5Ag5LybtFQ8-Hlvcpd65-jkj3iBLpITUlGP3hAmDARv82GsdOuZkuq0SJLf76wwwiF/s400/31.jpg" t8="true" width="266" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRIDdI7pQ7nWaAPhyvHv8zdxjD2zBOxbk7pf_Rs0uCQdmPp9czWwRunaIr6RC6yqEfnaH9GwCUJpSPy5YbOq2H5FXiGm8ZdibSsX_w4Z-5gXIpKvj9yIzzGr62LLZ7gkHIM8ZOdBtsMP7_/s1600/27.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRIDdI7pQ7nWaAPhyvHv8zdxjD2zBOxbk7pf_Rs0uCQdmPp9czWwRunaIr6RC6yqEfnaH9GwCUJpSPy5YbOq2H5FXiGm8ZdibSsX_w4Z-5gXIpKvj9yIzzGr62LLZ7gkHIM8ZOdBtsMP7_/s400/27.jpg" t8="true" width="400" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiN2NtVnuxORd4uMTmDeqgI_uXUTY6Y-ksJRkeDAbRJuMpFvrQ_cI56SkbGgu6rDDne28N0ztiv5jm_3F-nFxEz4dy2NIp0orXKALz07sC2UREAruP9vpKsYWVkcCXhIZ8zACy87cO20K0v/s1600/28.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiN2NtVnuxORd4uMTmDeqgI_uXUTY6Y-ksJRkeDAbRJuMpFvrQ_cI56SkbGgu6rDDne28N0ztiv5jm_3F-nFxEz4dy2NIp0orXKALz07sC2UREAruP9vpKsYWVkcCXhIZ8zACy87cO20K0v/s400/28.jpg" t8="true" width="400" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIOqXZXnmsdeO8ui_Xx6QpSbLAiwVy4jJKgIRWuflFSNJxtmzTVTucx6D-1W1mrP1DOorX0zT6xNcHxz3yzU9xkcO0ARq3g6_4Ew8Fzi5HwS-YDjgthYMPcaqT2YlDGKGTGz5H2juppKLY/s1600/30.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIOqXZXnmsdeO8ui_Xx6QpSbLAiwVy4jJKgIRWuflFSNJxtmzTVTucx6D-1W1mrP1DOorX0zT6xNcHxz3yzU9xkcO0ARq3g6_4Ew8Fzi5HwS-YDjgthYMPcaqT2YlDGKGTGz5H2juppKLY/s400/30.jpg" t8="true" width="400" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiI3xKIAz9DJcWafB77L5PT4R309kjPpMSS7eawzgMlGDgfJjBWrDS_YHrgYXcozLTsABDk0uW-gB8KQHqvU6KHTeCacKRutTAzZPPcEbVGtjVyXKeB1sTl7by3kb6v8RbwfF2sRz7-7K55/s1600/IMG_0937.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiI3xKIAz9DJcWafB77L5PT4R309kjPpMSS7eawzgMlGDgfJjBWrDS_YHrgYXcozLTsABDk0uW-gB8KQHqvU6KHTeCacKRutTAzZPPcEbVGtjVyXKeB1sTl7by3kb6v8RbwfF2sRz7-7K55/s400/IMG_0937.jpg" t8="true" width="266" /></a></div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1232167583452858095.post-58843340303867738502011-05-30T15:54:00.001+02:002011-05-30T15:54:24.637+02:00In the garden<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Like any other toddlers, my boys are happiest when they are outside, running amok. Thanks to my mother, we were able to clear out a very overgrown piece of garden on the side of our house and create a garden especially designed for the boys to enjoy. It has been over a year now, and are they ever enjoying their beautiful space! Thanks mom!</span><br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9eGQL5p6A295kAkVD_n9PaZMeoJ70FVy9qCETbwk43jO8YKN1LvPnNFtKO2WMxItUYWhKasp74BpOZAfORdyl72a5U4Tp0uMUAY-WFK3jwMKCRafvzuJn9R_se6S2pSzdNN_syucD2_io/s1600/21.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9eGQL5p6A295kAkVD_n9PaZMeoJ70FVy9qCETbwk43jO8YKN1LvPnNFtKO2WMxItUYWhKasp74BpOZAfORdyl72a5U4Tp0uMUAY-WFK3jwMKCRafvzuJn9R_se6S2pSzdNN_syucD2_io/s400/21.gif" t8="true" width="266" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixQyfXgungUw-bM98756BfoliRFJLJPbtK6rJoIoWfa52jN36PVlqMhC-SLROima96okLKYmFAODBRMAf7DESc55Xm5UBno4NP9K11pG2GSq0VzPY7rmdoL_wicogxp53lFcspFuWa-J6m/s1600/22.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixQyfXgungUw-bM98756BfoliRFJLJPbtK6rJoIoWfa52jN36PVlqMhC-SLROima96okLKYmFAODBRMAf7DESc55Xm5UBno4NP9K11pG2GSq0VzPY7rmdoL_wicogxp53lFcspFuWa-J6m/s400/22.gif" t8="true" width="266" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxUZjw0erL3Fd2TR-yXMKqkbsd02PY1ljmcikAXiuN1vxkdbchd24Ac89H0WNzI8OCMO0fcMShxol7j79bd3MMwsprMhdau63DlkcNskmchyphenhyphenI7om6nXnvqwQu6Fdh2WWv7MFOoaUjr3nAd/s1600/23.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxUZjw0erL3Fd2TR-yXMKqkbsd02PY1ljmcikAXiuN1vxkdbchd24Ac89H0WNzI8OCMO0fcMShxol7j79bd3MMwsprMhdau63DlkcNskmchyphenhyphenI7om6nXnvqwQu6Fdh2WWv7MFOoaUjr3nAd/s400/23.gif" t8="true" width="400" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_bqbwzD3EpMeaDJXuTC0-0RV3c9kuYHcwtgdt2gaBG9zwMrkSYpprjTRkdc5ZbDaoMbWmuAP_9TRp6uks3VXTb3ulon_xBlReZwT6wt_X5ybL1CzPVF05dUSDpE7Tgkx-Cbrfi0SO4twa/s1600/24.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_bqbwzD3EpMeaDJXuTC0-0RV3c9kuYHcwtgdt2gaBG9zwMrkSYpprjTRkdc5ZbDaoMbWmuAP_9TRp6uks3VXTb3ulon_xBlReZwT6wt_X5ybL1CzPVF05dUSDpE7Tgkx-Cbrfi0SO4twa/s400/24.gif" t8="true" width="400" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipBbxGNr6ZB0del3yTgs5buX7mFHbgEwhjn2_hyzx9fUBwZ3r4fhA6yGtR_MgzhbFnXPor6H0YxgKAVA8uZsjgzzGKNzuFMo4CZIt1nhQGfu2nPLmQwA1Yz8Wtk6jUpUKqPYm8XCJj1Q66/s1600/25.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipBbxGNr6ZB0del3yTgs5buX7mFHbgEwhjn2_hyzx9fUBwZ3r4fhA6yGtR_MgzhbFnXPor6H0YxgKAVA8uZsjgzzGKNzuFMo4CZIt1nhQGfu2nPLmQwA1Yz8Wtk6jUpUKqPYm8XCJj1Q66/s400/25.gif" t8="true" width="266" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxc3ywcqeA6BQcFRKeNIc47CNXIzfd2LgeqIa0s0wGrBWQAWDG1yBPBbH4yv3HfHQPkLLtOcqBeMVbnss0af9OPXMuNarfK2K5C6Qy1jKwQSuAywpBhNaNca8HF3w5OwJ_MvFMXPp_9dhl/s1600/26.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxc3ywcqeA6BQcFRKeNIc47CNXIzfd2LgeqIa0s0wGrBWQAWDG1yBPBbH4yv3HfHQPkLLtOcqBeMVbnss0af9OPXMuNarfK2K5C6Qy1jKwQSuAywpBhNaNca8HF3w5OwJ_MvFMXPp_9dhl/s400/26.jpg" t8="true" width="266" /></a></div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1232167583452858095.post-52982243900650237412011-05-30T15:54:00.000+02:002011-05-30T15:54:07.807+02:00Out and about<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">We are really blessed to have so many fun and kiddie-friendly places to visit - this was a lovely morning spent with the boys.</span><br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfoCFOMvyeoALGyip2YNNbUlJqH-DoAeW_1sEhvRvAgO-bkgNLcyaeXVXfIYsAu4ZQZFSteclPk1D3PgFyckGqN9qwFaHT38NWhRvFgjJ7A2kxzcQEwIJmRKm5lxLMYCEmcwVl-sZ1j4oT/s1600/9.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfoCFOMvyeoALGyip2YNNbUlJqH-DoAeW_1sEhvRvAgO-bkgNLcyaeXVXfIYsAu4ZQZFSteclPk1D3PgFyckGqN9qwFaHT38NWhRvFgjJ7A2kxzcQEwIJmRKm5lxLMYCEmcwVl-sZ1j4oT/s400/9.gif" t8="true" width="400" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKYHkmACtCuw9QK1wHKAwjm89CTq6LgFCc73uGOdPG8h03IZXBRAgrSUfRuczBlqncidPLSu6Wvh9cxm8QfCCemL-2rDC0ExACRoDdjxc5OJijuf_H3G_uKWU1bwuybyFd2NqEtfN-w3DF/s1600/10.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKYHkmACtCuw9QK1wHKAwjm89CTq6LgFCc73uGOdPG8h03IZXBRAgrSUfRuczBlqncidPLSu6Wvh9cxm8QfCCemL-2rDC0ExACRoDdjxc5OJijuf_H3G_uKWU1bwuybyFd2NqEtfN-w3DF/s400/10.gif" t8="true" width="400" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi63wUVA0ClBe20AL6CzEyNKTc5d4V3_msMJEIvc7KoBWm8RitKgJ5TrqhaD_cBcZ-2oxSZR8NovFwMvwsRVdiy_6JvlzifFBPliB9KXJRRquVNLCHj_ASEnyrjxX2fOTF7yq8EwfxRtHKV/s1600/11.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi63wUVA0ClBe20AL6CzEyNKTc5d4V3_msMJEIvc7KoBWm8RitKgJ5TrqhaD_cBcZ-2oxSZR8NovFwMvwsRVdiy_6JvlzifFBPliB9KXJRRquVNLCHj_ASEnyrjxX2fOTF7yq8EwfxRtHKV/s400/11.gif" t8="true" width="400" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgS3xq-2mXQXXFO9qxXaArKZrSXEqXB9jqKW_CychDhyphenhyphenmMhtl6PVkoxZ0-qxlpAobZMHRNipAepxB-AaoN4NgYU8yN1m9zYdeCsl1BroqTvD-DkITxqAHRS8f4oeXFkorJbShd34_MOFvEC/s1600/12.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgS3xq-2mXQXXFO9qxXaArKZrSXEqXB9jqKW_CychDhyphenhyphenmMhtl6PVkoxZ0-qxlpAobZMHRNipAepxB-AaoN4NgYU8yN1m9zYdeCsl1BroqTvD-DkITxqAHRS8f4oeXFkorJbShd34_MOFvEC/s400/12.gif" t8="true" width="266" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjh50as9UQi0NxODrOih32luNCQ_6hHdKTevPo2mgmfmmTQzRzFZv1FEdO2clAANCKzIm4DsI4XmFwX8AG3RpUWba7qTiZ3SW3dNGEmFCpmCGBYE79AJWbvaHEFp2SHuhGx6TZjl5WJ_BrG/s1600/13.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjh50as9UQi0NxODrOih32luNCQ_6hHdKTevPo2mgmfmmTQzRzFZv1FEdO2clAANCKzIm4DsI4XmFwX8AG3RpUWba7qTiZ3SW3dNGEmFCpmCGBYE79AJWbvaHEFp2SHuhGx6TZjl5WJ_BrG/s400/13.gif" t8="true" width="400" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6LGPefl-CvCJaK8YeCnLYqjo-lSm9jzn9n6SHugJFjcKBcjHtXPfLUBtRnVxjL72aYN-agwBFpZQ2vRVjNUOOMlS4fHmHjI3jHmFwxWEo_M-4yIQi7oUyEr06K2zFkgeFnwLaDHfGFsPM/s1600/14.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6LGPefl-CvCJaK8YeCnLYqjo-lSm9jzn9n6SHugJFjcKBcjHtXPfLUBtRnVxjL72aYN-agwBFpZQ2vRVjNUOOMlS4fHmHjI3jHmFwxWEo_M-4yIQi7oUyEr06K2zFkgeFnwLaDHfGFsPM/s400/14.gif" t8="true" width="400" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXzvtb5WAHLhGCkne6t7i600SMQjhcTaF9j2CGgiidpBIgwJ29lI54zKOa7HSqd67npccwU7K5tE8C_RiinHngUILDP1nWnRORuHzjVLAEDMtyU8CnsP8LukjbHywBfUA7w823zLv8Rhvh/s1600/15.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXzvtb5WAHLhGCkne6t7i600SMQjhcTaF9j2CGgiidpBIgwJ29lI54zKOa7HSqd67npccwU7K5tE8C_RiinHngUILDP1nWnRORuHzjVLAEDMtyU8CnsP8LukjbHywBfUA7w823zLv8Rhvh/s400/15.gif" t8="true" width="400" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyZXWlGEWrD9wVluSaUYfgeZcuDDIP-khq-E7lsalsiVaWgtnSUE-NMqdA8lf451x_Syv2MFqk6boM6JvjWjy-V2gZN-Uv_c-q0psVg5fZezxz8qjrDpfxAUbUv8qkoMGhZwKuRdZ4NB2P/s1600/16.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyZXWlGEWrD9wVluSaUYfgeZcuDDIP-khq-E7lsalsiVaWgtnSUE-NMqdA8lf451x_Syv2MFqk6boM6JvjWjy-V2gZN-Uv_c-q0psVg5fZezxz8qjrDpfxAUbUv8qkoMGhZwKuRdZ4NB2P/s400/16.gif" t8="true" width="400" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7emD-ZR945gerVkp7amu3rIdlEjB2n6x1HbT3btKlGfwnySyullla5L7kOWYRSqLDIRN0Qdmnx1c3YHLtiMBuH8sRDzSjHi69-2GKoS04rQ8LWejn8DGZmDqvGTCYPovgxNqG-5ZISxcL/s1600/17.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7emD-ZR945gerVkp7amu3rIdlEjB2n6x1HbT3btKlGfwnySyullla5L7kOWYRSqLDIRN0Qdmnx1c3YHLtiMBuH8sRDzSjHi69-2GKoS04rQ8LWejn8DGZmDqvGTCYPovgxNqG-5ZISxcL/s400/17.gif" t8="true" width="400" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXkvA-yuecjl73SsSb2HLSEkR7irGx1C3cbjufPHpiDzHBfpO06x6R3DAjCVEdJopf9XNIIcro8ysxVImate8D0kanZlOstY1fwGgn__Mz2ft2MJX9w3dJeybmyhXKu_FZ9GRU5AEHuUrc/s1600/18.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXkvA-yuecjl73SsSb2HLSEkR7irGx1C3cbjufPHpiDzHBfpO06x6R3DAjCVEdJopf9XNIIcro8ysxVImate8D0kanZlOstY1fwGgn__Mz2ft2MJX9w3dJeybmyhXKu_FZ9GRU5AEHuUrc/s400/18.gif" t8="true" width="266" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEio8LZQW1ozs-WnnKowvXrlCmQ2BSDCe08-sZ1un9di02pcXNRgb4fwIW4H38UeSDKQvDhNBK80DBdEaJT1K2XBR8gEfKU8jQUvajWSWojx7g6FW9vMOkMmywVwjExgAw4ezDvBlO1R0m/s1600/19.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEio8LZQW1ozs-WnnKowvXrlCmQ2BSDCe08-sZ1un9di02pcXNRgb4fwIW4H38UeSDKQvDhNBK80DBdEaJT1K2XBR8gEfKU8jQUvajWSWojx7g6FW9vMOkMmywVwjExgAw4ezDvBlO1R0m/s400/19.gif" t8="true" width="266" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiERgNIqOlNTzp-iqLlMz6O62UZ5h95MYunm-JqHLI-z2tKfgf_kNwjsqk6jJmRs8WSQnyB6BYP7vedwsRsOmi3saGY1zKBSv6heM8qN0CtMaNTBMHKobq1sranbLa4Cb5VrK2dqvslNjc_/s1600/20.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiERgNIqOlNTzp-iqLlMz6O62UZ5h95MYunm-JqHLI-z2tKfgf_kNwjsqk6jJmRs8WSQnyB6BYP7vedwsRsOmi3saGY1zKBSv6heM8qN0CtMaNTBMHKobq1sranbLa4Cb5VrK2dqvslNjc_/s400/20.gif" t8="true" width="400" /></a></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1232167583452858095.post-48942250103363483162011-05-30T15:53:00.001+02:002011-05-30T15:53:51.032+02:00Saying goodbye<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">My sister has been gone (in Australia) for just over 4 weeks now... I do miss her terribly and will forever cherish our last weeks together. It was filled with so much love, chaos, fun, laughter and joy...</span><br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJ8ITK2QTt4uaDAqtAGhstuPDpvAfa6-YQXTZji5hmSXdLKXQRKnd8RULpcwfsN9GebjMtKHz9pL-YGvGnmMqzjMDkq3JCmtJmU8p-u3AlahSl7XSYytIs8KKCGPMcuca_tZELMjYicjFt/s1600/5.gif" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJ8ITK2QTt4uaDAqtAGhstuPDpvAfa6-YQXTZji5hmSXdLKXQRKnd8RULpcwfsN9GebjMtKHz9pL-YGvGnmMqzjMDkq3JCmtJmU8p-u3AlahSl7XSYytIs8KKCGPMcuca_tZELMjYicjFt/s400/5.gif" t8="true" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My niece, Natalia</td></tr>
</tbody></table><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3iygyaa9_aGO2hlXoay6QyJ_BLRlnUXryXOMq79JiAwNkCPzepKHKeazl8ctIC8M253tonjNqvNowJ0im_NmL5QvrbZ_X5jV_TNTatUBBHobqCnVZbBCL944DajnkmvbPoIGgluF6F6ZU/s1600/6.gif" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3iygyaa9_aGO2hlXoay6QyJ_BLRlnUXryXOMq79JiAwNkCPzepKHKeazl8ctIC8M253tonjNqvNowJ0im_NmL5QvrbZ_X5jV_TNTatUBBHobqCnVZbBCL944DajnkmvbPoIGgluF6F6ZU/s400/6.gif" t8="true" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Malakai & Natalia</td></tr>
</tbody></table><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0sqeIPhG2f-ixay9jzL_sodCUEise3G6VBX9bJDyGBctui8xLvGMyxfT0cZiqxygAo8x5GR-Ys_62HXp3jAx8kOHK3zQDTQYc2niTQkTaRECjftmSQQjhORDD2YNgcZeyxPIpRM0J1QqS/s1600/7.gif" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0sqeIPhG2f-ixay9jzL_sodCUEise3G6VBX9bJDyGBctui8xLvGMyxfT0cZiqxygAo8x5GR-Ys_62HXp3jAx8kOHK3zQDTQYc2niTQkTaRECjftmSQQjhORDD2YNgcZeyxPIpRM0J1QqS/s400/7.gif" t8="true" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The three 'Ls' - Leigh, Lorraine and Loren</td></tr>
</tbody></table><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiE7RqWN_uQBivMFwXxnax8OGCKETOc4fvmhUQ0fvUlvoiA8KbpMV00ohWK5RDV2A6Wobb00mbhHj8C8uz9wil0VGxVLOyDXwXyEBmhLFS5iMxpcbWNHQh8MipQPl5fzTSEs5PHUjaSiuR5/s1600/8.gif" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiE7RqWN_uQBivMFwXxnax8OGCKETOc4fvmhUQ0fvUlvoiA8KbpMV00ohWK5RDV2A6Wobb00mbhHj8C8uz9wil0VGxVLOyDXwXyEBmhLFS5iMxpcbWNHQh8MipQPl5fzTSEs5PHUjaSiuR5/s400/8.gif" t8="true" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our last pic together</td></tr>
</tbody></table><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHTem7RiOPuCfkc7U9axIDNT3sJn0nXieGBuOn60olKuacJwwJaBsgFJcJTcWJ0tH_QG3eZfgnFOl1XRuK1DA8vhvByXm7uv9jRlm9Aam4IVNDf3TwjTVld_nb487ct0RYK5gcuG9hT45o/s1600/8b.gif" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHTem7RiOPuCfkc7U9axIDNT3sJn0nXieGBuOn60olKuacJwwJaBsgFJcJTcWJ0tH_QG3eZfgnFOl1XRuK1DA8vhvByXm7uv9jRlm9Aam4IVNDf3TwjTVld_nb487ct0RYK5gcuG9hT45o/s400/8b.gif" t8="true" width="266" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My niece and I...</td></tr>
</tbody></table>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1232167583452858095.post-74675593811742425522011-05-30T15:53:00.000+02:002011-05-30T15:53:32.228+02:00FLASH!<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I <em>have</em> been taking photographs lately... I just haven't <strike>made</strike> found the time to edit them and get them onto the blog. So the next couple of posts will be simply pictures (and a word or two)... Enjoy grannies!</span><br />
<br />
<span style="font-family: Arial;">OK... so every now and again I get a bit of a bee in my bonnet when it comes to playing a bit of 'dress up' with my boys. This doesn't come around often because I know that within 15 minutes whatever gorgeous, colour-coded, matching outfit I've managed to scramble together from what is actually washed and in the cupboard, will just be covered in mud, juice, biscuit crumbs and bits of toilet-roll-inner...</span><br />
<br />
<span style="font-family: Arial;">But nonetheless... Here are my boys, dressed ever so smartly for their cousin Jack's birthday party! Aren't they just super adorable?</span><br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcopG-JoUVghds_wQjNTkNhLfzaJcfBVn4HpLW3K2YEN24odu2xuypL3to_HHBBYW8rIyzugVfmeGIw2Rphkv1RiY0_nuf__OMJvXtQtJIlQmVXWfrnMgONnl_4uxp2Ol_ZEGN34YJhLH2/s1600/1.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcopG-JoUVghds_wQjNTkNhLfzaJcfBVn4HpLW3K2YEN24odu2xuypL3to_HHBBYW8rIyzugVfmeGIw2Rphkv1RiY0_nuf__OMJvXtQtJIlQmVXWfrnMgONnl_4uxp2Ol_ZEGN34YJhLH2/s400/1.gif" t8="true" width="266" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwWpMslcTkwC-wqcNCPUrVuDkomHSG7DmibwaI659I6cc9WfiF-7A1TXjyPosDzsm5RigBO70CuUioA8yYQqXlsHFwni4YNysdSDLqdDiQZFU78ygxNfgaRtXCqXMz4f9i66ll8YWiUgO-/s1600/2.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwWpMslcTkwC-wqcNCPUrVuDkomHSG7DmibwaI659I6cc9WfiF-7A1TXjyPosDzsm5RigBO70CuUioA8yYQqXlsHFwni4YNysdSDLqdDiQZFU78ygxNfgaRtXCqXMz4f9i66ll8YWiUgO-/s400/2.gif" t8="true" width="266" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEhCj-uQ_UTN1BSlDN4BmTsR9FKLEPbxOJ9Roe3jsmQPE5e4CMx9AkH2pWF35DtLgfhXjWsVIFfGa9m1C3gIxPN7izdf42bZCmZp9dDbYwEvBvdSDtlgabQzNquo_RQjPL-_kyE6xaWWvR/s1600/3b.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEhCj-uQ_UTN1BSlDN4BmTsR9FKLEPbxOJ9Roe3jsmQPE5e4CMx9AkH2pWF35DtLgfhXjWsVIFfGa9m1C3gIxPN7izdf42bZCmZp9dDbYwEvBvdSDtlgabQzNquo_RQjPL-_kyE6xaWWvR/s400/3b.gif" t8="true" width="400" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzXssKTc1iRgOmvuLqQICSc8RtXwO_KzJkZlaaG_eZIUJ1sXpk2TfJLQKBsHsmMtZUVFQZGHfv6O1XU-r4xaD4E9EfJZq9wf1r0df9TezyYdA2JlLbPtzCK0UAL6hVu4-uc-ABrmvNc2eq/s1600/4.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzXssKTc1iRgOmvuLqQICSc8RtXwO_KzJkZlaaG_eZIUJ1sXpk2TfJLQKBsHsmMtZUVFQZGHfv6O1XU-r4xaD4E9EfJZq9wf1r0df9TezyYdA2JlLbPtzCK0UAL6hVu4-uc-ABrmvNc2eq/s400/4.gif" t8="true" width="400" /></a></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1232167583452858095.post-68460009591339339612011-05-26T10:17:00.000+02:002011-05-26T10:17:36.507+02:00It's not acceptable<div class="separator" style="clear: both; text-align: center;"><object width="320" height="266" class="BLOGGER-youtube-video" classid="clsid:D27CDB6E-AE6D-11cf-96B8-444553540000" codebase="http://download.macromedia.com/pub/shockwave/cabs/flash/swflash.cab#version=6,0,40,0" data-thumbnail-src="http://0.gvt0.com/vi/T549VoLca_Q/0.jpg"><param name="movie" value="http://www.youtube.com/v/T549VoLca_Q&fs=1&source=uds" /><param name="bgcolor" value="#FFFFFF" /><embed width="320" height="266" src="http://www.youtube.com/v/T549VoLca_Q&fs=1&source=uds" type="application/x-shockwave-flash"></embed></object></div><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">This is to the point and honest - just do it people, eradicate the r-word from your vocabulary today.</span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1232167583452858095.post-55473340021805118582011-05-24T16:18:00.000+02:002011-05-24T16:18:15.256+02:00Talk to me baby!<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">One of the first things I decided to do when I received the diagnosis that Malakai had Down syndrome was to invest in sign language tools. I bought books, flashcards and even imported DVD's from the United States.</span><br />
<br />
<span style="font-family: Arial;">Why?</span><br />
<br />
<span style="font-family: Arial;">Well, as a big talker and communicator myself, I tried to imagine a day where I was unable to communicate with others and share what I was thinking and feeling - the idea of it made me rather want to die than to be alienated.</span><br />
<br />
<span style="font-family: Arial;">So why would I ever knowingly put my child in such an awfully frustrating position?</span><br />
<br />
<span style="font-family: Arial;">It took Malakai a good 18 months of daily sign demonstrations before he started to really take off with using signs regularly and today, at just under three years, he can do over 150 signs and uses about 30-40 on a regular basis to communicate, share, ask and express his feelings, thoughts, ideas, understanding of concepts and love for us. </span><br />
<br />
<span style="font-family: Arial;">I really incorporated signing into everything we did and forced myself to keep it up - knowing that I was potentially giving him the biggest gift of his life.</span><br />
<br />
<span style="font-family: Arial;">The payoff has been immense. Oh yes, there are studies that point to signing increasing literacy and language acquisition, and yes it has meant that I have made sure my child doesn't exist in a world that is devoid of his input... Those are all very important benefits.</span><br />
<br />
<span style="font-family: Arial;">And yes, my son is now signing two and three word sentences and has been sight reading words like 'dog', 'cat', 'more' etc since he was two years old. I know that he's able to communicate in sentences and read simply because I have ensured that he was given the ability to sign.</span><br />
<br />
<span style="font-family: Arial;">But the most important benefit, in my opinion, is the way that signing has enabled me to really understand just how bright my child is. I can see his understanding of concepts, I can watch his knowledge grow on a daily basis, and this is mostly through his ability to sign to me.</span><br />
<br />
<span style="font-family: Arial;">I see my child differently, I see his ability far more than I see any disability. That is the beauty of signing, of sharing, of <em>talking</em> with my child far earlier than simple verbal motor planning skills would have allowed. I see my child as able, competent, clever, and oh so expressive!</span><br />
<br />
<span style="font-family: Arial;">The fact that parents of children with Down syndrome still sit today and question whether they should do sign language with their precious children simply confounds me... Why would they not want to give their children a voice? Why would they not want to share and talk and communicate with their children?</span><br />
<br />
<span style="font-family: Arial;">Signing has been the single most important intervention that I decided on for Malakai's development and I think that every single child can benefit from the ability to communicate.</span>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1232167583452858095.post-5103866842286187712011-05-16T21:49:00.000+02:002011-05-16T21:49:34.374+02:00Say whaaat?<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">It has been a long slog... For those who follow my blog, you'll remember our months and months of sleepless nights. Our excellent sleeper (read: Malakai) did a full 180, and became a not-so-excellent-sleeper. </span><br />
<br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Here is my sheepish conclusion to our sleep-debacle.</span><br />
<br />
<span style="font-family: Arial;">Malakai has mysteriously started sleeping well again. How? Well, damned if I know - seriously. I wracked my brain (and doubled my caffeine supply) for months trying to figure out what was going on, I visited many doctors and came up with many hypothesis (in the complete absence of any of the doctors taking me seriously or proposing a solution that worked). </span><br />
<br />
<span style="font-family: Arial;">I must say, initially I wasn't concerned. I put his lack of sleeping down to teething, a new brother, winter colds and flu - y'know, the regular stuff. But then it went on... and on... and on... and it got worse with more frequent wakings and more moaning and less and less of the good stuff - sleep. </span><br />
<br />
<span style="font-family: Arial;">I went from mention his sleep issues in passing during routine check-ups, to specifically asking his doctors if there was something we should be looking at, to taking him for specialist tests and researching the Internet for answers, links, clues - anything.</span><br />
<br />
<span style="font-family: Arial;">Eventually I recorded his nighttime antics and got Malakai to a <strike>friggen expensive</strike> paediatric neurologist. Eventually! A doctor who agreed that what she saw on the video tape was very concerning - at last, someone believed me! At last, I didn't feel as though I was making this all up - she saw it too!</span><br />
<br />
<span style="font-family: Arial;">And then what happens? A week later Malakai starts sleeping through again. Mysteriously. Without any warning... much to my excitement and I must admit - dismay as well. Why? Well, now I do feel like a completely neurotic attention-seeking mother... and I don't like it. Because I was worried, for months!</span><br />
<br />
<span style="font-family: Arial;">So, we did a sleep EEG and sleep study anyway - just because it was scheduled and we had the <strike>very expensive</strike> doctor's expert assistance at hand. And, the tests came back clear - good news and all. </span><br />
<br />
<span style="font-family: Arial;">So here we sit with the mystery of the 9 - 10 months of no sleep, the disturbing sleep behaviour that even had a paediatric neurologist concerned, and it all just disappears. <strike>I give up</strike>. Is it possible for sleep issues to occur, disappear and then reoccur? Well? I can't say because honestly I am sick to death of trawling the Internet for information... I am all infomationed-out. </span><br />
<br />
<span style="font-family: Arial;">I am, however, open to the notion that because Malakai has Down syndrome I may take things a bit more seriously. And yes, many doctors looked at me as if I was crazy - "your toddler isn't sleeping? ha ha ha! join the legions of other mothers..." But I have a problem with anything that can potentially put a bit more distance between Malakai and his <em>Full Potential</em> (that shiny thing in the distance that is currently just a fuzzy concept...), and months of sleep deprivation does not a healthy learner make... So, yes, I think I may have been more concerned about it than I would be if Harlan suddenly decided to stop sleeping (that is, of course, purely hypothetical, because he has never slept well).</span><br />
<br />
<span style="font-family: Arial;">Am I the only one out there? Or are other mothers who've been blessed with children with special needs as anal and demanding and fierce as I am when it comes to their kids? I don't think I'm alone... I hope I'm not alone...</span>Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-1232167583452858095.post-46474714064451913232011-05-11T16:09:00.000+02:002011-05-11T16:09:02.404+02:00Precious<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I just finished watching the movie "Precious". Very seldom do I think that a movie comes along that really takes difficult topics head on. No holds barred, full steam ahead, calling a spade a spade... whatever way you'd like to describe it.</span><br />
<br />
<span style="font-family: Arial;">But I am left wondering what I have just witnessed.</span><br />
<br />
<span style="font-family: Arial;">Did I see abuse, dysfunction, darkness and despair? Yes, I think that was pretty obvious. But I think I also saw hope, redemption and prayed and cried and urged Precious to find the strength to make it better.</span><br />
<br />
<span style="font-family: Arial;">But how? How do you find the faith to move in a positive direction when all you've ever heard is that you're stupid, fat, useless, and unlovable?</span><br />
<br />
<span style="font-family: Arial;">Oh my soul - that another human being has to be brought into the world hearing those words come from their mother's mouth. I just cannot comprehend it - and yet, I know it happens. I know it's out there. I know that too many children have heard those words.</span><br />
<br />
<span style="font-family: Arial;">And yes, the fact that Precious' first child was referred to the entire movie as 'mongol' did not escape me. Was I offended? No. Was I terribly hurt for that child? Yes. Did I appreciate the honesty and understand that this does happen? Yes.</span><br />
<br />
<span style="font-family: Arial;">The movie ends as Precious takes her first daughter (who has Down syndrome) and her son and walks away from her mother (and hopefully her past) forever. And we are left wondering if she'll make it. Can she make it? Lord, I hope she can.</span><br />
<br />
<span style="font-family: Arial;">And I am left not wondering about the movie as much as I'm wondering about the world in general. </span><br />
<br />
<span style="font-family: Arial;">Just recently the world celebrated the death of the nortorious Osama Bin Laden. Yes, I think his death was news-worthy and yes, I think that may help to finally bring the whole 9/11 atrocity to a close.</span><br />
<br />
<span style="font-family: Arial;">But as I watched the news coverage that day, just over a week ago, I remember thinking clearly to myself - 'Have we lost our minds?'.</span><br />
<br />
<span style="font-family: Arial;">Yes, I know that his death is important and that he caused the deaths of thousands of innocent men, women and children. That because of him families are without fathers, mothers, children and siblings that they loved dearly.</span><br />
<br />
<span style="font-family: Arial;">I get all of that.</span><br />
<br />
<span style="font-family: Arial;">But lets rewind even further - why the hell did he spend years and countless amounts of money planning to fly planes full of people into buildings full of people? What the hell for?</span><br />
<br />
<span style="font-family: Arial;">To prove some ideology? </span><br />
<br />
<span style="font-family: Arial;">And then to retaliate and spend more countless amounts of money on wars all over the place for what? What? And how can anyone defend spending this kind of money - when there is even one Precious and even one child being called a mongol in this day and age... </span><br />
<br />
<span style="font-family: Arial;">Can we not look at our own back yards and just fix the terrible mess that is growing there? Can we not decide that life, dignity and love are important? <em>More</em> important than revenge, war, money and industry?</span><br />
<br />
<span style="font-family: Arial;">How can we, as citizens of the world, be ok with spending billions on destruction, war and death when only a fraction of money is being spent on making this place - this planet - inhabitable and sustainable for everyone on it.</span><br />
<br />
<span style="font-family: Arial;">When is it going to stop being about us and them, and start being about everyone? Every single human being.</span><br />
<br />
<span style="font-family: Arial;">When is giving every human being the means to reach their potential going to be our top priority?</span><br />
<br />
<span style="font-family: Arial;">But hey, I am not a head of state and I certainly don't know what it's like to be in that position. I am a mother though, and I have a son with a disability, and I know that most people just want what I want - to be safe, loved, at peace and hopeful for a better future.</span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1232167583452858095.post-41608895385687594312011-05-03T22:57:00.000+02:002011-05-03T22:57:46.461+02:00Growing and Learning<span style="font-family: Verdana, sans-serif;">Today, Malakai's therapist asked me if there was anything that his teachers thought he needed some extra help with, that they could address in future therapy sessions? Well... um... I hadn't actually <em>asked</em>... <em>*ahem*</em></span><br />
<br />
<span style="font-family: Verdana;">So, when I dropped Malakai off at creche after the therapy session I dutifully asked the teacher what I am pretty sure I should have asked before this morning (<em>...embarrassed face...</em>) - what areas can we work on at home and in therapy to make sure that Malakai is not lagging behind in any areas?</span><br />
<br />
<span style="font-family: Verdana;">The answer my friends? Not much. Yes! Not much!!</span><br />
<br />
<span style="font-family: Verdana;">According to Malakai's teacher, the <em>only</em> areas where he's a bit behind his typical friends is in speech (which we know already) and running (ok...).</span><br />
<br />
<span style="font-family: Verdana;">So! I am utterly friggen pleased with my little man! He is fitting in so well and really taking part. He knows just as much as his friends do and his teacher tells me that he's actually ahead them with his ball skills. </span><br />
<br />
<span style="font-family: Verdana;">Oh. My. Fluttering. Heart. <em>be still...</em></span><br />
<br />
<span style="font-family: Verdana;">I know, I know... speech and running. Yes, yes, yes. But these things we know - Malakai is delayed in speech, but he's using sign language so well (he knows over 150 signs and uses about 30 on a regular day-to-day basis). We know what he wants, he knows what he wants, his teachers know what he wants, so we're pretty satisfied that he's <em>communicating</em>, even if it's not in the traditional sense.</span><br />
<br />
<span style="font-family: Verdana;">As for running - you should see it. Malakai runs as if he's an Olympic athlete crossing the line. Head back, arms stretched out behind him... It is too cute. However, this running-posture (for want of a better word) does not a sprinter make... </span><br />
<br />
<span style="font-family: Verdana;">So - my son's a bit of a slow runner. I'm really not crying into my lap about that one!</span><br />
<br />
<span style="font-family: Verdana;">What I am doing is having a little party in my heart for my beautiful boy - I am celebrating his spirit, his determination, his joy, his ability and most of all, his humble little offering of himself - in all his "wondrousness" - to his world.</span><br />
<br />
<span style="font-family: Verdana;">You go my boy.</span><br />
<br />
<span style="font-family: Verdana;">Just the other day I asked my husband if he thought, on the day that Malakai was diagnosed, it would ever actually be this... well... normal? </span><br />
<br />
<span style="font-family: Verdana;">And it is. Life is life. Our son is loved as any other son is loved. There is no difference in our hearts, and there is no difference in reality. He is simply perfect - extra chromosome or not - just as he is.</span>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1232167583452858095.post-48904634904583572052011-04-04T16:27:00.000+02:002011-04-04T16:27:48.817+02:00Pix Fix<span style="font-family: Verdana, sans-serif;">You'd think that for a mother, photographer, and someone who just lost every single photograph of my boys taken in the last 18 months (courtesy of my computer crashing...) I'd have been furiously taking many more pictures to fill the gap?</span><br />
<br />
<span style="font-family: Verdana;">Mmmm?</span><br />
<br />
<span style="font-family: Verdana;">Well... no.</span><br />
<br />
<span style="font-family: Verdana;">As a person, I used to be very organised - all my priorities in place and colour-coded. Not anymore. No.</span><br />
<br />
<span style="font-family: Verdana;">Besides, I often find that if I'm photographing a 'moment', I'm not really <em>there</em> to enjoy it...</span><br />
<br />
<span style="font-family: Verdana;">Anyhoo - I finally took some pictures of my beloved boys this weekend and I am rather sad that Malakai is just not that into smiling for the camera anymore. In fact, as time slips through my fingers, he's becoming more demanding with what will make him smile (and laughing is even more difficult).</span><br />
<br />
<span style="font-family: Verdana;">So, Malakai is my serious boy right now - with the <em>very</em> occasional smile.</span><br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNrnvMhUf-3oqye9CR52mli-xQAW8Q4KCnqWxKF5JqT_FE7cn3jodocLVA_xUl9fZ_ON4hODXNz_UCYWFP5i77Xx1RoTFns0Sr3u5vxh5rFNSswC4AgNYQusJ47va04qBXNBbR1-kvRuPG/s1600/6.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" r6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNrnvMhUf-3oqye9CR52mli-xQAW8Q4KCnqWxKF5JqT_FE7cn3jodocLVA_xUl9fZ_ON4hODXNz_UCYWFP5i77Xx1RoTFns0Sr3u5vxh5rFNSswC4AgNYQusJ47va04qBXNBbR1-kvRuPG/s400/6.jpg" width="265" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhN9mn3H7vHMVVLQcRZsPyRN2QgwXBCz96q0kxNYaPfAhvQ0Gqm9yyUmEyueiQu0N_8df5V_ACYDLEaRilviMB7KCukWO8FKr0RUmya4j1Lu5UQC2KxcPAZ9nnpL-CS2iq_QG4y9SgF0ZR2/s1600/7.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" r6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhN9mn3H7vHMVVLQcRZsPyRN2QgwXBCz96q0kxNYaPfAhvQ0Gqm9yyUmEyueiQu0N_8df5V_ACYDLEaRilviMB7KCukWO8FKr0RUmya4j1Lu5UQC2KxcPAZ9nnpL-CS2iq_QG4y9SgF0ZR2/s400/7.jpg" width="266" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5ajcKJnUdRyeHM5jdCSVDlvzIWDoPFjzFaZ01WcZjPyzPTVyO9Uc7xxylpOMPuv_x8OzMb866hZcrh8w1d1Ox7RwOdAHD1DPccCOGB9ksZ1fKlhjHLySAl1hkpnZuc24sJC8fPBuMBjCR/s1600/8.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" r6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5ajcKJnUdRyeHM5jdCSVDlvzIWDoPFjzFaZ01WcZjPyzPTVyO9Uc7xxylpOMPuv_x8OzMb866hZcrh8w1d1Ox7RwOdAHD1DPccCOGB9ksZ1fKlhjHLySAl1hkpnZuc24sJC8fPBuMBjCR/s400/8.jpg" width="266" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-bEcteX0bhJ_yISOwb2Dgjt-0Xe9k3jbUTVSkXhZchzd_vvhehuPeoUdaJWeQlwbECG9z6QO_Si7e579m9g46PgkDK7qn-dt2ZaK-zXiNlzJcjSRoMIGyC09zvzkctb-X0B59IrXmbpwI/s1600/9.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" r6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-bEcteX0bhJ_yISOwb2Dgjt-0Xe9k3jbUTVSkXhZchzd_vvhehuPeoUdaJWeQlwbECG9z6QO_Si7e579m9g46PgkDK7qn-dt2ZaK-zXiNlzJcjSRoMIGyC09zvzkctb-X0B59IrXmbpwI/s400/9.jpg" width="266" /></a></div><br />
<span style="font-family: Verdana; font-size: x-small;"><em>Please note: Malakai does not have a skin disease - that's shaving cream... and in the last picture he's singing... aaahhh cute!</em></span><br />
<br />
<span style="font-family: Verdana;">And Harlan is still my little smiler - so easy to amuse!</span><br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhe12wIQNK1ui1OvYY1KZiORqF3Z9xB2cMV9LxO6fU4BpoUv-UmXBeAseqZ34tQIYPAs4d3x1pWpHrWVGEq8LvmCRX6ImU5_RZh63B04dhHrFFEmGQzG72Nh-TTMwN8fDfvm6GBjbJfNGyw/s1600/1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" r6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhe12wIQNK1ui1OvYY1KZiORqF3Z9xB2cMV9LxO6fU4BpoUv-UmXBeAseqZ34tQIYPAs4d3x1pWpHrWVGEq8LvmCRX6ImU5_RZh63B04dhHrFFEmGQzG72Nh-TTMwN8fDfvm6GBjbJfNGyw/s400/1.jpg" width="400" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7KZ6VjrdDTcTH7SExEsRRsCwF9Qn8PHotOfVMVCkIW9x2U7sIMcXtVuM4ocnHNaPsKMjqni_LDsGO8upRz-ijZZw80JEOYqPaKKGXCwMDjqkDrGM15j7fFDQXQhZ74m6KicqR4l-6b_u-/s1600/2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" r6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7KZ6VjrdDTcTH7SExEsRRsCwF9Qn8PHotOfVMVCkIW9x2U7sIMcXtVuM4ocnHNaPsKMjqni_LDsGO8upRz-ijZZw80JEOYqPaKKGXCwMDjqkDrGM15j7fFDQXQhZ74m6KicqR4l-6b_u-/s400/2.jpg" width="266" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0ilXEHhYW2SYzKDClLxJl3qG4U7sYQCIBJ9YcQ2h73q0qesPF_ovquBavJJdLyO1T56XuR2SHJDnFPpuOpSwZpvBGDIAEU-YbXDBsUREjKX19CRkRBTIAFUFDY5Lb670v7GDLe4TONMPK/s1600/3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" r6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0ilXEHhYW2SYzKDClLxJl3qG4U7sYQCIBJ9YcQ2h73q0qesPF_ovquBavJJdLyO1T56XuR2SHJDnFPpuOpSwZpvBGDIAEU-YbXDBsUREjKX19CRkRBTIAFUFDY5Lb670v7GDLe4TONMPK/s400/3.jpg" width="400" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiduecm8RgD4kFjUZgDtRIB8I1Yd8bp2CaRUQgrnuDauPQV24ilX69OvXkvTXiISs1bOFjdaYHoUVSRMI6gVj66JdnhlqEZhL_JlUF0gbtjFiG2fpmpGN4OeDBVGBWLRqewWdrf2nZUl7XO/s1600/4.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" r6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiduecm8RgD4kFjUZgDtRIB8I1Yd8bp2CaRUQgrnuDauPQV24ilX69OvXkvTXiISs1bOFjdaYHoUVSRMI6gVj66JdnhlqEZhL_JlUF0gbtjFiG2fpmpGN4OeDBVGBWLRqewWdrf2nZUl7XO/s400/4.jpg" width="400" /></a></div>Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-1232167583452858095.post-71331905861289996182011-03-26T20:26:00.000+02:002011-03-26T20:26:37.874+02:00Jumping for Joy?<span style="font-family: Verdana, sans-serif;">I am sitting at my dining room table, it is very quiet and I can hear the crickets singing their melodic chorus outside in my garden. The boys are asleep (for now) and hubby is at the rugby, so I am enveloped in my own wondrous company! </span><br />
<br />
<span style="font-family: Verdana;">Not that I think I'm wondrous or anything - just that I have always been a person who simply loves to be alone, to do my own thing, to read, ruminate, clean, totter around... Not easy with two little ones under 3 years! So, whenever this happens, which is about once a month, I just relish in my alone-ness. I let it wrap me up like a big fluffy just-washed blanket.</span><br />
<br />
<span style="font-family: Verdana;">As always, life is busy - I actually wish I had another expression, because that one is getting really old now. Hmpf! But it is what it is! I am pleased to have a new client, and the prospects are very exciting! It does however mean more work at this point - but I am okay with that.</span><br />
<br />
<span style="font-family: Verdana;">Harlan is growing bigger and more adventurous everyday, but he's still amazingly attached to me. He seems to get severe separation anxiety and isn't very social with other little ones - shame! I think he's actually a little wary of other kids because his big brother (*ahem*) is rather brutal with him.</span><br />
<br />
<span style="font-family: Verdana;">I am amazed at Harlan's complete focus and determination to understand how things work, how they fit, how they stack, how they fall, how they taste, how they feel, and how they break... He can busy himself for ages on simply screwing the top on and off a bottle.</span><br />
<br />
<span style="font-family: Verdana;">Malakai, on the other hand, is going through a phase where he wants tons of input. He wants to be shown, he wants to learn and he wants an adult to be by his side. But, he's doing so well as school - he actually doesn't want to come home when I collect him in the afternoon. </span><br />
<br />
<span style="font-family: Verdana;">The other day when I collected him, he saw me coming and quickly scooted his butt onto the collective blanket where all his friends were sitting. I called 'Malakai!' and he looked the <em>other way!</em> It was so funny!</span><br />
<br />
<span style="font-family: Verdana;">Otherwise, I am having such a pain of a time disciplining Mr M - still! I just don't know if anything is sinking in... His latest is to run past Harlan and grab some hair and carry on running! Seriously! I just don't know... And he knows he's being naughty.</span><br />
<br />
<span style="font-family: Verdana;">Also, as Malakai gets older I see both his amazing strengths and I am starting to come face-to-face with his weaknesses. I cannot believe that Malakai can read, that he understands so many signs, that he's so darn clever! He really is an incredibly bright little boy. </span><br />
<br />
<span style="font-family: Verdana;">On the other side of the coin, we're working on 'jumping' at physio at the moment, and I catch myself thinking how strange it is... we have to teach Malakai how to do something that his cousin (who is much younger than him) can do already with no problem. And he <em>hates</em> it too... Where most kids literally jump for joy. Ai ai ai... I am sometimes reminded that Malakai actually does have special needs - which brings me to the next thing.</span><br />
<br />
<span style="font-family: Verdana;">The fact that I have to be <em>reminded</em> that my child has special needs is testament in itself of how this journey is just so beautiful, so fulfilling, so amazing. Yes, I sometimes want to cry because my son needs to be taught how to jump, but for the most part he's just my really amazing, very clever and incredibly loving son. I love that we we are blinded by Malakai's ABILITIES!</span><br />
<br />
<span style="font-family: Verdana;">Finally, I have found a fantastic doctor. In South Africa we only have roughly 5 paediatric neurologists, and so the wait for an appointment can be between 10 - 12 months. Luckily I discovered a newly qualified PaedNeuro and had to only wait one week - ONE WEEK - for an appointment! That is really amazing!</span><br />
<br />
<span style="font-family: Verdana;">Anyhoo - we had a one hour session and we covered everything from birth to current day. We spoke about Malakai's development including physical, emotional, sensory, behavioural - you name it, we covered it! She was so thorough! Then, I showed her Malakai's sleep video and I held my breath. I think I have just been told so many times that I'm losing the plot that I was afraid she'd think so too.</span><br />
<br />
<span style="font-family: Verdana;">Thank heavens she agreed that Malakai was not behaving normally in his sleep! Yay! I am not mad!</span><br />
<br />
<span style="font-family: Verdana;">So, we now have to wait for a sleep study (any tips from other moms would be awesome) and an EEG. Once again though, not many people who do this in South Africa, so I have no idea when we're going to get an appointment. The reason we're doing an EEG is because the doctor suspects (from watching the video) that Malakai might have nocturnal epilepsy. The EEG might confirm this or it might not even pick it up (as often happens, even when epilepsy is present). However, the sleep study should also narrow things down a bit for us! </span><br />
<br />
<span style="font-family: Verdana;">I cannot express how relieved I am that we are finally taking action and might actually have a diagnosis for Malakai's sleep issues sometime soon. He is so amazing, so gorgeous and so beautiful - imagine what he's going to be like when he's actually getting a good night's sleep? Can anyone spell 'a.n.g.e.l.'?</span><br />
<br />
<span style="font-family: Verdana;">Anyhoo - that's us for now. Back to some awesome 'me time'!</span>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1232167583452858095.post-3296305073996276922011-03-08T15:45:00.000+02:002011-03-08T15:45:49.278+02:00Its been so long...<span style="font-family: Verdana, sans-serif;">I regret to acknowledge that I have totally neglected my blog these past weeks, and I am so terribly sorry. Not only have I now got <em>a ton</em> of things to say (which makes for very arduous reading), but I have also lost track of my favourite blogs - the reading of which brightens my days and gives me constant hope and reflection.</span><br />
<br />
<span style="font-family: Verdana;">By way of an attempted apology, I'll use sub-headers in this post, so that you can just skip right past anything that doesn't tickle your fancy!</span><br />
<br />
<span style="font-family: Verdana;">Work, work, work...</span><br />
<span style="font-family: Verdana;">I have been working my proverbial backside to the proverbial grindstone... I have a new editor and she's getting things into the kind of shape she likes them to be, which means working very hard on two week deadlines (that usually take four weeks). This has been the biggest reason why I haven't had any time for <em>anything</em> but work, sleep and kiddies.</span><br />
<br />
<span style="font-family: Verdana;">Sleep, or lack thereof</span><br />
<span style="font-family: Verdana;">The second reason for my lack of time has to do with the fact that the boys are not just waking up at night - they're starting their antics as early as 8:30pm (and they go to sleep at 7:30pm...). Now any self-respecting mother and father will know that this scenario leaves you with... well... no time whatsoever to relax, catch up on emails, watch a movie, or just vegetate on the couch with a good book. It's all work, kiddies, work, kiddies and a few much needed hours of sleep here and there.</span><br />
<br />
<span style="font-family: Verdana;">Sleep Training</span><br />
<span style="font-family: Verdana;">Which brings me to sleep training... aaahhh...</span><br />
<span style="font-family: Verdana;">I have admitted to anyone who will listen that I am completely and obviously useless when it comes to sorting out my children's sleep habits - so I've brought someone in. For roughly the price of a four-star hotel per night, she comes in and is sleep training Harlan for me. </span><br />
<span style="font-family: Verdana;">So, I've had two good night's rest and Harlan is halfway towards sleeping through, bada-bing bada-boom! </span><br />
<br />
<span style="font-family: Verdana;">Sleep Issues</span><br />
<span style="font-family: Verdana;">Following Harlan, the sleep trainer will move onto Malakai the with singular focus of telling me what on earth is going on with him. I want an expert (and outsider's) opinion as to whether Malakai's sleep issues are behavioural or not. Which brings me to my next point...</span><br />
<br />
<span style="font-family: Verdana;">Munchausen by proxy syndrome (MBPS)</span><br />
<span style="font-family: Verdana;">A condition where mothers often 'create' illnesses for their children (either by pretending or actually harming them) in order to get attention. Not a nice thing, no. But I am at the point with our family doctor where I feel like I'm carrying a big board around my neck that says "Hey, my name is Loren and I have MBPS".</span><br />
<span style="font-family: Verdana;">We've ruled out benign joint hypermobility syndrome, we've investigated restless leg syndrome and ruled out 2 of the 3 major causes (iron deficiency and thyroid disease). And now the third, and possibly most relevant cause for restless leg syndrome in terms of Malakai's Down syndrome is a dopamine deficiency (which has been proven in Ds). </span><br />
<span style="font-family: Verdana;">But the doctor is just not willing to take the route of treating dopamine deficiency because of the kinds of medication used, although I have read that toddlers can be given the medication if the pros far outweigh the cons (i.e. constant lack of sleep affecting ability to learn, function etc).</span><br />
<span style="font-family: Verdana;">And, when I ask him to check Malakai's dopamine levels he looks at me like I have MBPS. And, when I look at myself, I ask that question as well - am I taking this too far? Should I just accept that Malakai will not sleep? </span><br />
<br />
<span style="font-family: Verdana;">Well that's it for now folks - life is busy and now that we are making progress (for which I promise not to take the credit) with sleep, things just look more manageable. Sleep is an amazing thing, and prolonged lack of it can seriously turn your life grey.</span><br />
<br />
<span style="font-family: Verdana;">Here's to getting some sleep - for ALL of us!</span>Unknownnoreply@blogger.com8tag:blogger.com,1999:blog-1232167583452858095.post-82921024396355100562011-02-14T20:38:00.000+02:002011-02-14T20:38:48.112+02:00Sleepness nights<span style="font-family: Verdana, sans-serif;">So... The one thing I used to thank my lucky stars for was the fact that Malakai slept like a log, from eight weeks onwards. In fact, I was probably one of those annoyingly smug parents who all the other sleep-deprived-parents wanted to smack. I couldn't help it... but I was very very grateful.</span><br />
<br />
<span style="font-family: Verdana;">Then Harlan was born - and he didn't believe in sleep. It's just not really his thing. And that's ok, I've come to terms with it (it only took me about a year... but I've accepted it now).</span><br />
<br />
<span style="font-family: Verdana;">This post is not about Harlan though - because I know his night-time wakings have always been a part of who he is and he's used to crying and seeing his mom arrive to comfort him. Don't even talk to me about sleep training... </span><br />
<br />
<span style="font-family: Verdana;">This post is about Malakai. He's not sleeping anymore. For the last six months or so, he's slept terribly! Now, I understand that children with Down syndrome do tend to have poor sleeping habits - they have a high incidence of obstructive sleep apnea as well as more time spent in lighter-sleep-stages than a typical child.</span><br />
<br />
<span style="font-family: Verdana;">However, Malakai seems to be really uncomfortable in his sleep, as if something is hurting or annoying him. Of course, the first thing I did was to consult his ENT specialist, who told me that Malakai's tonsils and adenoids are perfect - so there is no chance that he has obstructive sleep apnea. OK - tick that off the list.</span><br />
<br />
<span style="font-family: Verdana;">But he continued to wake up moaning and tossing and turning 5 out of 7 nights a week. I decided to give him neurofen, a painkiller, and after this he sleeps like a dream. I spoke to his GP about this and she confirmed that neurofen does not induce drowsiness, so if he was just being naughty, he would continue being naughty. But because he sleeps afterwards, it means that he IS in pain and the neurofen soothes this and he's able to sleep.</span><br />
<br />
<span style="font-family: Verdana;">So - if he's in pain, what is it from? I started researching, because when Malakai wakes up moaning, the top half of his body is still and he's constantly stretching, rubbing and kicking his legs. So I thought that perhaps it could be his legs?</span><br />
<br />
<span style="font-family: Verdana;">So - my friends - I am finally at two possibilities and wanted to know if any Ds Mamas out there had any experience with either of these?</span><br />
<br />
<span style="font-family: Verdana;">It could be Restless Leg Syndrome, which can affect children as young as two years old (and Malakai is 2 and a half). It is characterised by legs that are sore when they are AT REST, so the person wants to move them in order to soothe the pain. It also happens often at night and affects the quality of sleep. It is neurological disorder that is caused (in part) by the underproduction of endorphins (and I believe this is the case with children with Down syndrome?). At this point, I have no idea how we could treat it if this was the case. I have read that certain medications can be prescribed, but of course, when it comes to a toddler, we'd have to go and see someone who could really help us out here.</span><br />
<br />
<span style="font-family: Verdana;">The second possibility is something called Benign Joint Hypermobility Syndrome (BJHS). It sounds rather complicated, but its not really. It's a condition that often affects people who are double-jointed, i.e. have hyper-mobile joints (as is the case with Down syndrome). Because of this hyper-mobility, there is less proprioceptive input from the leg joints, and so these individuals are putting too much strain on their legs during the day's activities (and not noticing it) and when they lie down to sleep at night they feel pain in their joints. For someone like Malakai, who's climbing, running, falling and jumping all day - he could be hurting his legs and not know it. Thing is, treatment involves controlling activity (impossible for Malakai) or psysio-therapy, which Malakai is already attending, to strengthen leg muscles. If I have to wait for his legs to become more muscular, it could be months and months of sleepless nights for him...</span><br />
<br />
<span style="font-family: Verdana;">What I do know is that I have to sort this out. Malakai is not getting the rest he so desperately needs to be able to learn to his full potential in the day time. And after a bad night's sleep the stinker is still up at 5:30am (as hard as I've tried to change that... another thing I've come to accept... lol).</span><br />
<br />
<span style="font-family: Verdana;">Any moms out there experience something similar? Any ideas? Am I reading too much into things? Do all children with Down syndrome moan in their sleep and look like they're in pain? It's just that the pain medication actually works and helps him to sleep, but I can't give him pain medication every other night...</span><br />
<br />
<span style="font-family: Verdana;">Any help or tips would be awesome! Thanks!</span>Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-1232167583452858095.post-3183326785151720652011-02-07T21:56:00.000+02:002011-02-07T21:56:20.514+02:00Happiness is...<span style="font-family: Verdana, sans-serif;">So... I'm meant to be working... I have deadlines looming over me like black thunder-filled clouds. So, naturally, I'm updating my (non-paying) blog!</span><br />
<br />
<span style="font-family: Verdana;">I couldn't resist though...</span><br />
<br />
<span style="font-family: Verdana;">Last weekend, we put Malakai in his little wagon and his dad pushed him and pulled him... I swear I could smell burning rubber (nevermind that the wheels on the wagon are plastic...). The faster Dad went, the louder Malakai laughed and wider his smile. He's a little sensory-junky this biggest </span><span style="font-family: Verdana;">boy of mine!</span><br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWUj5illGKBA6U6BJtDDyL9Rjs33MtFXdQH-15fcg_W_396Y1QVQuPZ2J_PbPSwfWZ01qSfZiXc0pW6OCm0e56xnUFRiWnV-0KqaprHToInIHqWJmaWWrg414ROE0TMosQ0yWGyZnfZdeX/s1600/43.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWUj5illGKBA6U6BJtDDyL9Rjs33MtFXdQH-15fcg_W_396Y1QVQuPZ2J_PbPSwfWZ01qSfZiXc0pW6OCm0e56xnUFRiWnV-0KqaprHToInIHqWJmaWWrg414ROE0TMosQ0yWGyZnfZdeX/s400/43.jpg" width="266" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqJ9OkupdTzN00HxAMiQuTys2Qu3tdHwH8B6rtjPCnxHZybLAf6cIxy_3GvwfROi4nv8mnl_VXkc8KyIlpvJ6IHvwxQQfT90LlQm3dwrpENliNK2RQlLiWCceNOje4TzfLfDHIdfR7bwso/s1600/45.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqJ9OkupdTzN00HxAMiQuTys2Qu3tdHwH8B6rtjPCnxHZybLAf6cIxy_3GvwfROi4nv8mnl_VXkc8KyIlpvJ6IHvwxQQfT90LlQm3dwrpENliNK2RQlLiWCceNOje4TzfLfDHIdfR7bwso/s400/45.jpg" width="266" /></a></div><br />
<br />
<div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQwl8gvYbHMr_Jeo9ZZBqKfCPwncqPjVt0URWongWzQJkr9qVOxGcLc1v0y358ol6iq6IT9_5e2t8JNVY5-ZdUgSWWfPK8WeYSCk_311j-uhD0m4uammi00CanYv6xQKKoK8NcAJF5cS0C/s1600/47.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQwl8gvYbHMr_Jeo9ZZBqKfCPwncqPjVt0URWongWzQJkr9qVOxGcLc1v0y358ol6iq6IT9_5e2t8JNVY5-ZdUgSWWfPK8WeYSCk_311j-uhD0m4uammi00CanYv6xQKKoK8NcAJF5cS0C/s400/47.jpg" width="400" /></a></div><br />
<div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizYPUFYVVfES-CFqICuLm48qE8H4VcULq8D58kGtxHSGUsHR_28-HqlvPAtsquvVExp9zHUMRopNRCZW3ZYiw4YkOJF8If4Ir9xAdlwaywCxOtgbo_WCYdVDSzqrcej2m8M32wLtgbaHyx/s1600/48.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizYPUFYVVfES-CFqICuLm48qE8H4VcULq8D58kGtxHSGUsHR_28-HqlvPAtsquvVExp9zHUMRopNRCZW3ZYiw4YkOJF8If4Ir9xAdlwaywCxOtgbo_WCYdVDSzqrcej2m8M32wLtgbaHyx/s400/48.jpg" width="266" /></a></div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><br />
</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;"><br />
</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;"><span style="font-family: Verdana, sans-serif;">And little Harlan? Well, let's just say he's not so keen on his dad's home-made roller coaster efforts... This was the closest thing to a 'smile' that I managed to catch on camera - the rest of the time he was holding on with white knuckles. Poor monkey!</span></div><br />
<div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKQxiUstajdQQ1XoM6cJYlWA3hNr7n_70wICshicu-QOdXI7WYLbbhJ2gC0ipQ0G70KUSHoE1tFK6_5gdjjS1UAuGzLycAPWkb9JkJCM7ixbENa6prDuSo-wqmG2NH7GNu2iCnoeggnRpM/s1600/46.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKQxiUstajdQQ1XoM6cJYlWA3hNr7n_70wICshicu-QOdXI7WYLbbhJ2gC0ipQ0G70KUSHoE1tFK6_5gdjjS1UAuGzLycAPWkb9JkJCM7ixbENa6prDuSo-wqmG2NH7GNu2iCnoeggnRpM/s400/46.jpg" width="266" /></a></div>Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-1232167583452858095.post-87156326412388253872011-02-04T22:21:00.000+02:002011-02-04T22:21:13.945+02:00THAT word again...<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiK6ZVs045wNcac-xfcX5nIwuM1ZYj1s5g1HXdEeITRPFzwG_vkK1Y1jDfBlXjavRpvtXAtP8Z9ArwWcmCdxcoYZc1XP_8ykJdXM_PwmJ6i3GfYwwAMCDAcS8o5iLhyphenhyphenluN1MhXz8ov28jIt/s1600/51.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiK6ZVs045wNcac-xfcX5nIwuM1ZYj1s5g1HXdEeITRPFzwG_vkK1Y1jDfBlXjavRpvtXAtP8Z9ArwWcmCdxcoYZc1XP_8ykJdXM_PwmJ6i3GfYwwAMCDAcS8o5iLhyphenhyphenluN1MhXz8ov28jIt/s400/51.jpg" width="400" /></a></div><br />
<span style="font-family: Verdana, sans-serif;">It never fails to sting. Like a petulant bee, refusing to move onto other sweeter things... like putting my winter-frozen foot into a hot bath... When I hear the word, it is as if the world dissapears, morphed into a hazy background. There is only one loud, big, slap-you-in-the-face word... retard.</span><br />
<br />
<span style="font-family: Verdana;">I gulp. Blink. Divert my eyes. <em>Should I say something? Explain how they are using my son's disability as an adjective. Do they care? Or am I just wasting my breath?</em></span><br />
<br />
<span style="font-family: Verdana;">People may argue, they may try to explain it away, that it doesn't mean anything, it's just a joke, it's not meant to harm... but I know. I know because I myself used the word, before my son was born. And I can tell you, it was never used in a positive light. I used it as a way to describe something that was 'less than', something that didn't quite measure up, something that was stupid. </span><br />
<br />
<span style="font-family: Verdana;">I feel sick when I remember how I used to throw the word around - I often remember how casually I let it roll from my tongue. I'll remember one time or another, when I used the word... while I'm making coffee, or while I'm running a bath. While I'm cooking or while I'm looking in my son's eyes...</span><br />
<br />
<span style="font-family: Verdana;">I can never take that away. I can never sit from a lofty height and preach to others. But I can stand solidly on the earth and say that I was there - I know what using that word is all about... And it's not good. </span><br />
<br />
<span style="font-family: Verdana;">It's disrespectful. It's hurtful. It's hateful.</span><span style="font-family: Verdana;"> </span><br />
<br />
<span style="font-family: Verdana;">I know this. </span><br />
<br />
<span style="font-family: Verdana;">Do you?</span><br />
<br />
<span style="font-family: Verdana;">Will you help me to spread the word to end the word?</span><br />
<br />
<span style="font-family: Verdana;">If you're still not sure, read this... it might convince you.</span><br />
<br />
<br />
<span style="font-family: Verdana;"><strong><a href="http://dsachieves.org/blog/?p=752">The People Who are the R-Word</a> </strong></span><br />
<span style="font-family: Verdana; font-size: x-small;">(by David Hingsburger)</span><br />
<br />
<span style="font-family: Verdana;"><span style="font-family: "Courier New", Courier, monospace;">The people who ‘ARE’ what the ‘R’ word refers to have a long history.</span></span><br />
<br />
<span style="font-family: Verdana;"><span style="font-family: "Courier New", Courier, monospace;">They have been torn from families and cast into institutions.</span></span><br />
<br />
<span style="font-family: Verdana;"><span style="font-family: "Courier New", Courier, monospace;">They have been beaten, hosed down, over medicated, under nourished, sterilized, brutalized, victimized.</span></span><br />
<br />
<span style="font-family: Verdana;"><span style="font-family: "Courier New", Courier, monospace;">They have been held captive, have been enslaved, have had their being given over to the state.</span></span><br />
<br />
<span style="font-family: Verdana;"><span style="font-family: "Courier New", Courier, monospace;">They are the group in society most likely to be physically, sexually and financially abused.</span></span><br />
<br />
<span style="font-family: Verdana;"><span style="font-family: "Courier New", Courier, monospace;">They are the group least likely to see justice, experience fair play, receive accommodation or support within the justice system.</span></span><br />
<br />
<span style="font-family: Verdana;"><span style="font-family: "Courier New", Courier, monospace;">They are the group most likely to be bullied, most likely to be tyrannized, most likely to be the target of taunts.</span></span><br />
<br />
<span style="font-family: Verdana;"><span style="font-family: "Courier New", Courier, monospace;">They are the least likely to have their hurt taken seriously, physical hurt, emotional hurt, spiritual hurt.</span></span><br />
<br />
<span style="font-family: Verdana;"><span style="font-family: "Courier New", Courier, monospace;">They are most likely to be ignored when they speak of pain, have their words diminished by an assumption of diminished capacity.</span></span><br />
<br />
<span style="font-family: Verdana;"><span style="font-family: "Courier New", Courier, monospace;">They are the least likely to ever be seen as equal, as equivalent and entirely whole.</span></span><br />
<br />
<span style="font-family: Verdana;"><span style="font-family: "Courier New", Courier, monospace;">They are the victim of some of the most widespread and pervasive prejudices imaginable.</span></span><br />
<br />
<span style="font-family: Verdana;"><span style="font-family: "Courier New", Courier, monospace;">They are those that the Nazi’s thought unworthy of life, they are those targeted by geneticists for non-existence, they need fear those who wear black hats and those who wear white coats.</span></span><br />
<br />
<span style="font-family: Verdana;"><span style="font-family: "Courier New", Courier, monospace;">They are educated only under protest, they are included as a concession rather than a right, they are neighbours only because petitions failed to keep them out.</span></span><br />
<br />
<span style="font-family: Verdana;"><span style="font-family: "Courier New", Courier, monospace;">They are kept from the leadership of their own movement, they are ignored by the media, their stories are told to glorify Gods that they do not worship.</span></span><br />
<br />
<span style="font-family: Verdana;"><span style="font-family: "Courier New", Courier, monospace;">That they are a ‘people’ is questioned even though they have a unique history, a unique voice, a unique perception of the world.</span></span><br />
<br />
<span style="font-family: Verdana;"><span style="font-family: "Courier New", Courier, monospace;">That they are a ‘community’ is questioned even though they have commonality, they have mutual goals, they have a collective vision of the future.</span></span><br />
<br />
<span style="font-family: Verdana;"><span style="font-family: "Courier New", Courier, monospace;">That they are have a legitimate place at the table is questioned simply because no one’s ever offered a seat.</span></span><br />
<br />
<span style="font-family: Verdana;"><span style="font-family: "Courier New", Courier, monospace;">They are a people.</span></span><br />
<br />
<span style="font-family: Verdana;"><span style="font-family: "Courier New", Courier, monospace;">They ask for respect and receive pity.</span></span><br />
<br />
<span style="font-family: Verdana;"><span style="font-family: Courier New;">They ask for fair play and are offered charity.</span></span><br />
<br />
<span style="font-family: Verdana;"><span style="font-family: "Courier New", Courier, monospace;">They ask for justice and wipe spittle off their face.</span></span><br />
<br />
<span style="font-family: Verdana;"><span style="font-family: "Courier New", Courier, monospace;">They ask to silence words that brutalize them and their concerns are trivialized.</span></span><br />
<br />
<span style="font-family: Verdana;"><span style="font-family: "Courier New", Courier, monospace;">They ask to walk safely through their communities and yet bullies go unpunished.</span></span><br />
<br />
<span style="font-family: Verdana;"><span style="font-family: "Courier New", Courier, monospace;">They ask to participate fully and they are denied access and accommodation and acceptance.</span></span><br />
<br />
<span style="font-family: Verdana;"><span style="font-family: "Courier New", Courier, monospace;">And this is NOW.</span></span><br />
<br />
<span style="font-family: Verdana;"><span style="font-family: "Courier New", Courier, monospace;">This is the people who have walked the land of the long corridor, who have waited at the frontier of our bias to finally be here, now. They have survived. They have come home. They have continued, silently and without fanfare, to take hold of freedom and live with dignity. They have given everything they have for what others take for granted. Their civil liberties are perceived as ‘gifts’ as ‘tokens’ and as ‘charity’. Their rights are seen as privileges. Their movement is, as of yet, unacknowledged. They are a people recently emancipated, new citizens, who are tentatively discovering their voice.</span></span><br />
<br />
<span style="font-family: Verdana;"><span style="font-family: "Courier New", Courier, monospace;">It is a voice not yet heard.</span></span><br />
<br />
<span style="font-family: Verdana;"><span style="font-family: "Courier New", Courier, monospace;">It is a voice not yet respected.</span></span><br />
<br />
<span style="font-family: Verdana;"><span style="font-family: "Courier New", Courier, monospace;">It is a voice not yet understood.</span></span><br />
<br />
<span style="font-family: Verdana;"><span style="font-family: "Courier New", Courier, monospace;">But it is speaking.</span></span><br />
<br />
<span style="font-family: Verdana;"><span style="font-family: "Courier New", Courier, monospace;">And when it is finally heard. The world will change.</span></span><br />
<br />
<span style="font-family: Verdana;"><span style="font-family: "Courier New", Courier, monospace;">The ‘R’ word is an attack on a people who know discrimination. Tremble when you say it. Because those who should know better will be held accountable to those who know best.</span></span><br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://dsachieves.org/"><img border="0" h5="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHY7dc6P1uwf4UhCYoemJ1gbcTuBzSfK7Q5VWfBG-mxx8Ly6Q794mwGptgYTxx7sLmpTcD30hS6UwXcUCamNGSBiwPaqoWGPH1eYshio_0ecJMQgMFy2brfxy3lbQwKHZsBXy_kbvVZh1m/s1600/untitled.bmp" /></a></div>Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-1232167583452858095.post-85344212186895920452011-01-31T10:35:00.000+02:002011-01-31T10:35:12.334+02:00Happy Birthday Harlan<span style="font-family: Verdana, sans-serif;">Dearest Harlan,</span><br />
<br />
<span style="font-family: Verdana;">So here we are my boy - 365 days since you came screaming (literally) into the world. When I think of the last year, what comes to mind the most is your determined spirit. From the first day you were born, you have made your feelings known - that's for sure!</span><br />
<br />
<span style="font-family: Verdana;">Your first couple of months were difficult for you - and it was terrible for me to watch you being uncomfortable and unhappy, without much that I could do to help. I often worried how you would 'learn' to be happy with so few happy moments to go on... But boy was I wrong! You are about the happiest little guy I've ever met (when you're not tired or hungry...)!</span><br />
<br />
<span style="font-family: Verdana;">You brighten my day and challenge my resolve, you make me think twice and inspire me to give you the best. Your love for me is amazing - I didn't realise that someone so small could give so much love!</span><br />
<br />
<span style="font-family: Verdana;">So, in the past year you have gone from helpless little baby to a fully mobile almost-toddler! You are not walking yet, but I am convinced it's because in order to learn to walk, you need to <em>slow down</em> a bit... not something you know how to do!</span><br />
<br />
<span style="font-family: Verdana;">You do everything at warp speed - you crawl from one place to another faster than I've ever seen a baby crawl (you actually kind of 'run' on your hands and knees...). You climb up on things and want to imitate everything that your brother does... not always safe though my angel!</span><br />
<br />
<span style="font-family: Verdana;">You love to eat and your favourite word is 'more' - which you repeat over and over again while you eat breakfast, lunch, dinner and each snack in between! You can also say 'ball', 'dada', 'mama', 'woof' and 'juice'. You wave good-bye, do the signs for 'finished' and 'sleep' and you give everyone copious amounts of wide-mouthed kisses!</span><br />
<br />
<span style="font-family: Verdana;">This last year has been an amazing journey for me, Daddy and Malakai - getting to know you and making you part of our little family. We love you so much and think you're one amazing little boy!</span><br />
<br />
<span style="font-family: Verdana;">All our love baby boy!</span><br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcM1KDYGzVRJFBaCBdDbYHqtTS65A0T1IqJuXOu1e11JAWEsC1AfiugvVChLufN9zTrasL4GGBbY67K1A0D_1dl4f_9bYnCPg20XFVoQi45lsSQtgDvnxLL95NPiRnjpY0J1HwszHRjsAs/s1600/13.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" s5="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcM1KDYGzVRJFBaCBdDbYHqtTS65A0T1IqJuXOu1e11JAWEsC1AfiugvVChLufN9zTrasL4GGBbY67K1A0D_1dl4f_9bYnCPg20XFVoQi45lsSQtgDvnxLL95NPiRnjpY0J1HwszHRjsAs/s320/13.jpg" width="320" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMBktbuXqWTXlSFGfK21qQ4tJ6wK1y810TeHySs2bG7R85h6R0ZrHu5932YrgDezCOtkq4zBcsJbI1bspjlGhpeaArEez-ZxBBJYVFYXBNVAS1PIOaxdC6oea8Hv8hdakTC5KSEaqepqQs/s1600/15.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" s5="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMBktbuXqWTXlSFGfK21qQ4tJ6wK1y810TeHySs2bG7R85h6R0ZrHu5932YrgDezCOtkq4zBcsJbI1bspjlGhpeaArEez-ZxBBJYVFYXBNVAS1PIOaxdC6oea8Hv8hdakTC5KSEaqepqQs/s320/15.jpg" width="213" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhftb7N7SAHpcsMag25iu_REF-2dQnBPuWk6wNFqn131WiKFOg3Pbed4-4MW7WrtBhfSbTP5McpjESehz84iYBL1Is55bGI8RHkWnrGgPFXQaSyxADdf-mPWtFjgZ7G-ov3Ms37BsYWAhGT/s1600/16.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" s5="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhftb7N7SAHpcsMag25iu_REF-2dQnBPuWk6wNFqn131WiKFOg3Pbed4-4MW7WrtBhfSbTP5McpjESehz84iYBL1Is55bGI8RHkWnrGgPFXQaSyxADdf-mPWtFjgZ7G-ov3Ms37BsYWAhGT/s320/16.jpg" width="213" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9_DIj8KOQGkd867FVkKCRXqCYGbGyGK8Xk53Ksc8KsSg0f8FzuBBev6yjya4BIU4E2i0KTAkvwdNeXt8fK3wXAVPFi6E-eE8UsZTyiLEv5f_3li4J6PKrDWgtwMeIikxPQ_MV4Ax5RPzy/s1600/17.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" s5="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9_DIj8KOQGkd867FVkKCRXqCYGbGyGK8Xk53Ksc8KsSg0f8FzuBBev6yjya4BIU4E2i0KTAkvwdNeXt8fK3wXAVPFi6E-eE8UsZTyiLEv5f_3li4J6PKrDWgtwMeIikxPQ_MV4Ax5RPzy/s320/17.jpg" width="213" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFCbZY4TPxs0DFl9tFBphOWhyphenhyphenDnJmKWEhc_RNeuLZ2l8H_IaUD3I2jQcRvKf5dkCV2GgQhS3gnpmFzVtWe0JzsMrvhioa-56HMdwFcvu1DnrtrT_JZuIqyYp9gMw6WdvrKR9yAIHB-1xER/s1600/19.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" s5="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFCbZY4TPxs0DFl9tFBphOWhyphenhyphenDnJmKWEhc_RNeuLZ2l8H_IaUD3I2jQcRvKf5dkCV2GgQhS3gnpmFzVtWe0JzsMrvhioa-56HMdwFcvu1DnrtrT_JZuIqyYp9gMw6WdvrKR9yAIHB-1xER/s320/19.jpg" width="213" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivQUzmkI9_XX1B_ZBu9CFSV6FAPx8o6na63oFzEm6VrzeFz3C16DHq9R6J-mpVPHY3TyLLVi2cr6qFbhjaRKeGx3uipvL0gvur1qigCp5bSQ4Vzg1ebwHpGYpXJa5kyRoXekMVldvNw8Hg/s1600/21.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" s5="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivQUzmkI9_XX1B_ZBu9CFSV6FAPx8o6na63oFzEm6VrzeFz3C16DHq9R6J-mpVPHY3TyLLVi2cr6qFbhjaRKeGx3uipvL0gvur1qigCp5bSQ4Vzg1ebwHpGYpXJa5kyRoXekMVldvNw8Hg/s320/21.jpg" width="320" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWoXvN5UHsNAIFN7prtqnG2h35Gv7JIbr7jlEK10dMmf4etAZELoSkUcVz5y-fC5i8_dLxYpfBE7wtT7c0Oi2z8XIrr-qDMmncm2bQRotMQxc2GiwNxd7uj8kKv21sEK4I3Y4lZ72gWlse/s1600/22.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" s5="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWoXvN5UHsNAIFN7prtqnG2h35Gv7JIbr7jlEK10dMmf4etAZELoSkUcVz5y-fC5i8_dLxYpfBE7wtT7c0Oi2z8XIrr-qDMmncm2bQRotMQxc2GiwNxd7uj8kKv21sEK4I3Y4lZ72gWlse/s320/22.jpg" width="213" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZGWdUTBhtYb49szut1qWc7TQU_e2pPcvUOY2WiXmPcxGUMRAz5BnwUDgV4iKYGSzfJgRZYABJv6fniXzWIuPOE4dFju1o_TYwvTZ1axotMkz3zaQT1cE6bSKVTFnm3CEseqlyOaY3Xws0/s1600/23.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" s5="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZGWdUTBhtYb49szut1qWc7TQU_e2pPcvUOY2WiXmPcxGUMRAz5BnwUDgV4iKYGSzfJgRZYABJv6fniXzWIuPOE4dFju1o_TYwvTZ1axotMkz3zaQT1cE6bSKVTFnm3CEseqlyOaY3Xws0/s320/23.jpg" width="213" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7uD67L6N_H8LT1khrmcUjXy4zOqZlwF-arNlZOWAVAWBh30bSAs3TYRlhQcE36QD7VMkIhpboNtSvno5iVJbAJ37xO76KGjp4DXl8TcSsCA4hl3SEDNIs1J72XO0brDudYirRbZUGc8I_/s1600/25.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" s5="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7uD67L6N_H8LT1khrmcUjXy4zOqZlwF-arNlZOWAVAWBh30bSAs3TYRlhQcE36QD7VMkIhpboNtSvno5iVJbAJ37xO76KGjp4DXl8TcSsCA4hl3SEDNIs1J72XO0brDudYirRbZUGc8I_/s320/25.jpg" width="320" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhWH2501IzboELchY-8H5XNxw65_RyrjqBj27FIFyXQIypd_XNjzYFmDPEyQZcqv9V6rLbJiM9IgoJgRIJKOQKRJEd1HHLjkuc_B0vGNkN88u_hHY722gnRXPS-qp8Hc7XHjyDUGGJPf-q/s1600/26.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" s5="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhWH2501IzboELchY-8H5XNxw65_RyrjqBj27FIFyXQIypd_XNjzYFmDPEyQZcqv9V6rLbJiM9IgoJgRIJKOQKRJEd1HHLjkuc_B0vGNkN88u_hHY722gnRXPS-qp8Hc7XHjyDUGGJPf-q/s320/26.jpg" width="213" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYaoSigPuYMZMkB0rJXTHhJZusYyDRO5yDpKpUNxhWvRKduXusWk6pFGmManGaLbwTHVwbtpvuZjkgruA95ZF3vqOzBTznuQ-IXKF1CgFTgwNzoGFR9Tc-f-bdrnPHhDq1TStgAiOtAYw3/s1600/28.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" s5="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYaoSigPuYMZMkB0rJXTHhJZusYyDRO5yDpKpUNxhWvRKduXusWk6pFGmManGaLbwTHVwbtpvuZjkgruA95ZF3vqOzBTznuQ-IXKF1CgFTgwNzoGFR9Tc-f-bdrnPHhDq1TStgAiOtAYw3/s320/28.jpg" width="320" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHf2t9K_2PQhCdtqZ6da29m8TnIQfewJD7xfnmRd4Z3tyeqLcJlPnWzu877caeyZ2lcYYP0_sT3hLd8ItC6Sw2i9_mSw-iJofwN2nD3Sdv6FtvNIAzKT2DGxJE4m4_oZSRngrq1s9tHy43/s1600/38.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" s5="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHf2t9K_2PQhCdtqZ6da29m8TnIQfewJD7xfnmRd4Z3tyeqLcJlPnWzu877caeyZ2lcYYP0_sT3hLd8ItC6Sw2i9_mSw-iJofwN2nD3Sdv6FtvNIAzKT2DGxJE4m4_oZSRngrq1s9tHy43/s320/38.jpg" width="320" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhol-v2uB4rVG20pyiYLCHwRhSjRL1A0al1tNxpE-iSwYlk2UF3WLgizV2TeM5DARg-YEmZUlIdhka4t8kXf7jGwGv75pUc5GoKaeR6LIsvWf_kMnCYx5PDwIl4hrUjVUn84fTmAE1KiqBp/s1600/41.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" s5="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhol-v2uB4rVG20pyiYLCHwRhSjRL1A0al1tNxpE-iSwYlk2UF3WLgizV2TeM5DARg-YEmZUlIdhka4t8kXf7jGwGv75pUc5GoKaeR6LIsvWf_kMnCYx5PDwIl4hrUjVUn84fTmAE1KiqBp/s320/41.jpg" width="320" /></a></div>Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-1232167583452858095.post-57626445311227960482011-01-21T21:17:00.000+02:002011-01-21T21:17:22.149+02:00Hooray!<span style="font-family: Verdana, sans-serif;">Malakai's first two weeks at school have all-in-all been a good experience. I really kept an open mind, which helped so much!</span><br />
<br />
<span style="font-family: Verdana;">Unfortunately he has refused to eat the wonderful cooked lunches (I was so hoping he would see the other kids eating the lunch and buckle under the 'peer pressure', but no luck as yet). So, I'm packing him his standard sandwich and fruit combo - he's really fussy and will only eat certain kinds of sandwiches (peanut butter or bovril). </span><br />
<br />
<span style="font-family: Verdana;">Also, he started crying when I dropped him off at school in the mornings - I mean, he stuck to me like velcro and his teacher had to literally pry him out of my arms. Luckily, I know of an excellent remedy based on Touch Therapy, which really helps when our little ones are feeling a bit emotionally insecure. Three days of touch therapy and this morning he jumped out my arms and ran to play!</span><br />
<br />
<span style="font-family: Verdana;">As for the staff - I have watched, waited and not been pushy at all. I wanted them to discover the magic of Malakai all by themselves. I can't claim to know what they were thinking, but each one of the staff members has pulled me aside at some point this last week to tell me what a wonderful child Malakai is - how 'normal' he is... I am not offended by this description at all - I'm just pleased that their eyes have been opened to the possibilities that exist for every child (including those with different abilities). *smile*</span><br />
<br />
<span style="font-family: Verdana;">Malakai was naturally a bit shy and reserved for the first few days, but his teacher tells me that he's really taking part now, and there are two little ones in his class that he is particularly close to. Everyday, I hear a story that makes my heart beat a bit faster with delight.</span><br />
<br />
<span style="font-family: Verdana;">I believe that when learning about Noah's Ark, Malakai was the first to 'name' (using signs and animal sounds) most of the animals on the ark! Malakai is also very good at pointing to his various body parts, faster than the other kids apparently? And my favourite so far? During prayers, instead of saying 'amen' with the other kids, Malakai screams "Hooray!" with his hands in the air... </span><br />
<br />
<span style="font-family: Verdana;">Be still my beating heart...</span><br />
<br />
<span style="font-family: Verdana;">So - I'd say these first two weeks have been a raging success. They have far outstriped my wildest ideas (if I'd allowed myself to have any... which I didn't, pinkie-swear...).</span>Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-1232167583452858095.post-77867125840360891602011-01-15T22:24:00.000+02:002011-01-15T22:24:13.891+02:00'The' link...<span style="font-family: Verdana, sans-serif;">I always like to think of myself as a fairly organised and highly inquisitive person. I do well when it comes to gathering information - let's say, I like to be informed, it gives me a sense of control (although I know that much in life is <em>way </em>beyond my control!).</span><br />
<br />
<span style="font-family: Verdana;">Anyway!</span><br />
<br />
<span style="font-family: Verdana;">When Malakai was born and we found out that he had Down syndrome, it was something that I knew very little about. I had not even really met any people before with Down syndrome (contrary to every. single. other. person.... who spoke to us in the first few days who <em>all </em>seemed to know someone, or had a neighbour or had a sibling with Down syndrome...)</span><br />
<br />
<span style="font-family: Verdana;">After the initial shock wore off and I felt that I had truly come to bond with my new little baby, I immediately ordered several books from the internet and went on a mission to learn more about Down syndrome.</span><br />
<br />
<span style="font-family: Verdana;">Within a couple of months I felt that I knew almost everything that there was to know about Down syndrome... well not <em>everything</em>, but at least everything that was important to Malakai's development and health.</span><br />
<br />
<span style="font-family: Verdana;">But I didn't know everything. I missed out on ONE BIG THING... I noticed references to Down syndrome and Alzheimers, but I thought that was for when Malakai was older, much older... So, in my natural (and annoying) way of 'taking in only what is neccessary', I kind of skimmed over the subject of Alzheimers, thinking it wasn't relevant right now in our lives.</span><br />
<br />
<span style="font-family: Verdana;">I was wrong.</span><br />
<br />
<span style="font-family: Verdana;">It is so relevent, it is scary. I am still kind of struggling to understand it's impact (and I suppose so are the rest of the scientific community...) on Malakai's development, but I do know that it is here - right now.</span><br />
<br />
<span style="font-family: Verdana;">From what I understand, scientists have discovered one of the genes found to cause Alzheimers on the 21st Chromosome. This gene, called the APP gene, is responsible for manufacturing a protein (called beta-amyloid protein) that, when in too large doses (as is the case with Alzheimers and Down syndrome), causes 'potholes' to form in the 'highways' between brain cells. And when brain cells are not talking to each nicely (because there are potholes everywhere), they tend to die off.</span><br />
<br />
<span style="font-family: Verdana;">Now, in the general population - this gene becoming 'faulty' and overproducing the bad protein occurs much later in life (hence Alzheimers being primarily a disease of the aged). However, because people with Down syndrome have an additional copy of the 21st chromosome, and hence more of the bad protein, the damaging effects start... well... from birth. This is why the average age of Alzheimers onset in the Down syndrome population is between 25 and 30 years old.</span><br />
<br />
<span style="font-family: Verdana;">I always believed that Down syndrome was a 'fixed' condition. By that, I mean that I believed our children are born with a fixed amount of cognitive challenges. Of course, we cannot know what these challenges are exactly, as they will differ from child to child - but through early intervention and loads of love and encouragement, our children will be able to achieve almost anything they set their minds to - albeit at a slower pace (and sometimes not even much slower at all).</span><br />
<br />
<span style="font-family: Verdana;">I've always been soothed by the fact that we are doing everything we can for Malakai and that he's just so incredibly motivated and <em>wants</em> to learn. He is wonderful and beautiful and perfect. I wouldn't change him (or his extra chromosome) for anything. </span><br />
<br />
<span style="font-family: Verdana;">But I find it distinctly disturbing and completely unnerving that there is this constant, daily, hourly overproduction of a protein that is killing his brain cells. I am devastated at the realisation that Down syndrome is not a fixed, but a progressive condition. How do I come to this conclusion? Well, this APP gene and it's protein is over-produced in my child. This protein, when overproduced is <em>absolutely known</em> to cause plaques on the brain that slowly rob an individual of their cognitive ability...</span><br />
<br />
<span style="font-family: Verdana;">So what now?</span><br />
<br />
<span style="font-family: Verdana;">Well - thankfully, the race to find a cure for Alzheimers is on. Unfortunately, this is not because our beautiful children with Down syndrome are almost guaranteed to develop it - no... rather it is because so many in the general population are</span><span style="font-family: Verdana;"> in danger of developing this terrible condition, the treatment of which will rise into the hundreds of millions of dollars when the Baby-Boomers hit their 70's and 80's. This is something that that most governments cannot afford... hence the race...</span><br />
<br />
<span style="font-family: Verdana;">But what now? What about Malakai? What can be done for him and other little ones with Down syndrome... now?!</span><br />
<br />
<span style="font-family: Verdana;">I know of drug trials that are being done, by a Doctor called <a href="http://www.kennedykrieger.org/kki_staff.jsp?pid=1037">George Capone at the Kennedy Krieger Institute</a> in the US, on people with Down syndrome - drugs that will hopefully counteract, or at least slow down, the development of further cognitive delays. So I hold my breath and pray and hope that these drugs are successful. In fact, one of the youngters doing the trial is from a blog that I follow - you can read more about Hannah's bravery <a href="http://hannigans.blogspot.com/2011/01/rivastigmine-alzheimers-drug.html">here</a>. </span>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1232167583452858095.post-161563868721683062011-01-14T10:25:00.000+02:002011-01-14T10:25:11.600+02:00Malakai's First Day!<span style="font-family: Verdana, sans-serif;">Malakai started school on Tuesday... It was a wonderful day! I am so excited that he's going to be attending creche (half day for the moment) because I truly believe that there is only so much I can teach him... The rest he is going to learn from interacting with and emulating his peers.</span><br />
<br />
<span style="font-family: Verdana;">So far he's been a bit reluctant to eat or drink anything at school - I don't know if it's because he's having so much fun that he doesn't want to stop, or if he's just unsure of things (and he's a fussy eater as it is..). But we'll see! I am sure he won't starve to death in a matter of days...</span><br />
<br />
<span style="font-family: Verdana;">Otherwise, the teacher tells me that he's getting more involved with each passing day. On the first day, he kept pretty much to himself and just explored the buildings and the gardens. On the second day, he didn't partake in drawing-time, but played with toys close by. And on the third day, he participated with the other little kiddos during circle-music time, and he and another little girl played together nicely...</span><br />
<br />
<span style="font-family: Verdana;">I am just sitting back and seeing how things go at this point. Oh yes, I have my fears that he won't fit in, or that he'll throw something at another child and hurt them, or that he'll want to hug and touch the other kids all the time (he's very affectionate) which will freak them out. Oh yes... I have my fears that Malakai will be 'obviously' different. But I am doing very well at keeping these thoughts in check. </span><br />
<br />
<span style="font-family: Verdana;">I will not create stories about this that don't need to be told. I want the true stories, the true journey, the true magic to unfold naturally and without any colouring from me.</span><br />
<br />
<span style="font-family: Verdana;">I know that Malakai will do well - I know that he'll thrive in a fun and busy environment. I know that he has social delays - but I am sure this a purely because he hasn't really been exposed to many other children in his life so far. And the only way he's going to learn will be through experience.</span><br />
<br />
<span style="font-family: Verdana;">So, our first week at school has gone well!</span><br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdY9rNyHzmR8xcRCL0S9ZXGQaD48vDZn_8E4RuE9D8M_nAm4xLGp-Hx_R7z7d8YUbJlOXX5Plajgu2D2-wG8hb68yKeeysqqPau6i12CIbKf-PAz1siUUmdPAHzEDAWrCoSsY-5Unte2io/s1600/004.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="265" n4="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdY9rNyHzmR8xcRCL0S9ZXGQaD48vDZn_8E4RuE9D8M_nAm4xLGp-Hx_R7z7d8YUbJlOXX5Plajgu2D2-wG8hb68yKeeysqqPau6i12CIbKf-PAz1siUUmdPAHzEDAWrCoSsY-5Unte2io/s400/004.jpg" width="400" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZrwHbBjTh7mIfQ8EzDDQBurhdn5jEEDNoxDevcLXImGMivLHSEYXSNsjUo3gPy4OEEm9ukD_fcAMJqbJuMSAJl23VvpRoXUCZALyImKQvAfBuBBBklwzYpcP_DMcXqc8oaXRqHS8YbTbR/s1600/007.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="265" n4="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZrwHbBjTh7mIfQ8EzDDQBurhdn5jEEDNoxDevcLXImGMivLHSEYXSNsjUo3gPy4OEEm9ukD_fcAMJqbJuMSAJl23VvpRoXUCZALyImKQvAfBuBBBklwzYpcP_DMcXqc8oaXRqHS8YbTbR/s400/007.jpg" width="400" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfXcvnwa8gboL6fuiANR530NfjOevACjL79UqGqgDHERgfnEjsm8bHaKLj8Rm9BIWe7vu_L02XvLkhQx4bWel4-V3X7yRHU8ynBhJHedek5Ej_ZbTgjQulj9JVq1NZMLsCmUbKUapnO415/s1600/017.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="265" n4="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfXcvnwa8gboL6fuiANR530NfjOevACjL79UqGqgDHERgfnEjsm8bHaKLj8Rm9BIWe7vu_L02XvLkhQx4bWel4-V3X7yRHU8ynBhJHedek5Ej_ZbTgjQulj9JVq1NZMLsCmUbKUapnO415/s400/017.jpg" width="400" /></a></div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1232167583452858095.post-63396948667412327612011-01-03T21:29:00.000+02:002011-01-03T21:29:31.848+02:00Next stop... Happiness<span style="font-family: Verdana, sans-serif;">Wow! What a trip the last two weeks have been! We've spent so much time with our little boys, and as we've always noticed, they really do blossom when mommy and daddy are around!</span><br />
<br />
<span style="font-family: Verdana;">But, I must say I am thrilled to finally be sticking my toe in the tepid waters of a new year... There is something about a clean canvas that really gets my creative juices flowing... everything is just so hopeful, so exciting, so <em>possible</em> when a new year opens it's door.</span><br />
<br />
<span style="font-family: Verdana;">Malakai is starting school in a week's time and I am so excited for him! He could not be more bored and more frustrated within the confines of the home that has been his 'safe place to fall' from his birth. It is perfect though - he's been given everything he's needed here so far, but he's ready, <em>so ready</em> to spread his little wings and get out there into the big world. </span><br />
<br />
<span style="font-family: Verdana;">I have so much to prepare for him. A signing book so that his teacher knows the signs that he uses and is learning. A letter that I'm writing for the parents of the children in his class. A special meeting, where we will discuss where he is developmentally and where we're working towards. </span><br />
<br />
<span style="font-family: Verdana;">Oh, here we go! My little boy is leaving the safety and security of our home, where I have been able to guide every aspect of his development, to a place where I no longer have such influence... But I am excited about this, because I know that I do not know everything... and the world... the world is <em>his too.</em></span><br />
<br />
<span style="font-family: Verdana;">As for Harlan - he's just so adorable and determined. I think we have a little warrior on our hands. I know that his stubborn nature can make things difficult right now, but in future, it will fuel the fire of his self-realisation. So I am trying to find a way to introduce boundaries without making dull that fiery spirit of his. And this is not easy, but who said parenting would be easy? </span><br />
<br />
<span style="font-family: Verdana;">As for Darryl and myself - we've got our own dreams this year as well... Dreams that we want to realise, as best we can. And somehow - even after 2010 pushed us and squeezed us and pulled us to our knees - we feel that we have a fighting chance. </span><br />
<br />
<span style="font-family: Verdana;">So I will end off my first post of 2011 with a quote that I shared when I finally decided to resign from my job and take on writing full-time... When I 'took the leap' into a dark abyss and really prayed that my wings would grow... I think sums up beautifully our vision for the coming year...</span><br />
<br />
<span style="font-family: Verdana;"><em>"The very least you can do in your life is to figure out what you hope for. The most you can do is live inside that hope, running down its hallways, touching the walls on both sides."</em> - Barbara Kingsolver</span>Unknownnoreply@blogger.com1