tag:blogger.com,1999:blog-950610514704668490.comments2023-08-17T00:39:54.547+10:00A little bit of KaosMargarethttp://www.blogger.com/profile/06767582964487650597noreply@blogger.comBlogger1314125tag:blogger.com,1999:blog-950610514704668490.post-35459724549751178872020-05-01T05:04:27.336+10:002020-05-01T05:04:27.336+10:00This so cute! As a first time quilter, I loved the...This so cute! As a first time quilter, I loved the idea. Your directions are so easy to follow. Thanks for posting this.<br />Anonymoushttps://www.blogger.com/profile/00815222026184106979noreply@blogger.comtag:blogger.com,1999:blog-950610514704668490.post-33034069261469938572019-10-08T21:41:21.155+11:002019-10-08T21:41:21.155+11:00I never knew there was such a thing as a book weig...I never knew there was such a thing as a book weight! I have been known to grab a metal ruler, or another book to hold a book open ( usually so I can read while eating!). Will be looking for pattern ideas now, thank you!Diannehttps://www.blogger.com/profile/15144180266896805067noreply@blogger.comtag:blogger.com,1999:blog-950610514704668490.post-6249544228764522182019-08-10T20:59:27.057+10:002019-08-10T20:59:27.057+10:00Wow they look fantastic, what a brilliant idea usi...Wow they look fantastic, what a brilliant idea using chop sticks and glue gun! I recently bought a hot glue gun as the “ low temp” one is not as effective. I LOVE the hot one and used it to make a crown for my son’s comic con cosplay, similar process to your wands. I will have to make some wands now!Diannehttps://www.blogger.com/profile/15144180266896805067noreply@blogger.comtag:blogger.com,1999:blog-950610514704668490.post-73744693589363673722019-06-26T21:01:20.214+10:002019-06-26T21:01:20.214+10:00I love the simple colour way, and the fix in each ...I love the simple colour way, and the fix in each corner! The border works perfectly.Diannehttps://www.blogger.com/profile/15144180266896805067noreply@blogger.comtag:blogger.com,1999:blog-950610514704668490.post-35653695692233160292019-03-06T11:16:01.417+11:002019-03-06T11:16:01.417+11:00Thank you for this awesome tutorial! Beautiful qu...Thank you for this awesome tutorial! Beautiful quilt. I started mind already! Thanks for taking the time to put this tutorial together!!<br /><br />Shelly. Anonymoushttps://www.blogger.com/profile/10692238222955385012noreply@blogger.comtag:blogger.com,1999:blog-950610514704668490.post-54862208937489404572018-05-23T22:36:19.767+10:002018-05-23T22:36:19.767+10:00Very well put Margaret,even as an ECIS professiona...Very well put Margaret,even as an ECIS professional transitioning to working with NDIS clients, it is a indeed a minefield! It is so complicated as you say, and I really feel for our non English speaking clients.Reading the NDIS grassroots Facebook page is a real eye-opener into people's real life experiences with the NDIS. The best recommendation is to be prepared, so I hope you find the information sessions useful and informative. Good luck!Diannehttps://www.blogger.com/profile/15144180266896805067noreply@blogger.comtag:blogger.com,1999:blog-950610514704668490.post-5783276482915527152018-03-31T18:21:23.602+11:002018-03-31T18:21:23.602+11:00Life does get busy, and finding time to sew/read/ ...Life does get busy, and finding time to sew/read/ write gets harder and harder to find. Best of luck with your writing challenge!Diannehttps://www.blogger.com/profile/15144180266896805067noreply@blogger.comtag:blogger.com,1999:blog-950610514704668490.post-22298409779491034562018-03-07T22:50:13.157+11:002018-03-07T22:50:13.157+11:00Wanted to THANK YOU for the direct and to the poin...Wanted to THANK YOU for the direct and to the point tutorial! I can follow it and it makes an impressive quilt 💕 !Im going to teach a few of my clients to quilt for a life skills class level 2 , they are very excited to learn ! This is terrific !Anonymoushttps://www.blogger.com/profile/08954164256909722818noreply@blogger.comtag:blogger.com,1999:blog-950610514704668490.post-6536596529156449822018-02-20T21:23:04.717+11:002018-02-20T21:23:04.717+11:00Beautiful photo, beautiful words Margaret. Beautiful photo, beautiful words Margaret. Diannehttps://www.blogger.com/profile/15144180266896805067noreply@blogger.comtag:blogger.com,1999:blog-950610514704668490.post-117101474289166532017-02-14T18:22:57.482+11:002017-02-14T18:22:57.482+11:00Great blog..Keep on sharing more blog like this
...Great blog..Keep on sharing more blog like this <br /><br /><a href="http://www.richardsusskind.com/locations/offices-clerkenwell/" rel="nofollow">Creative Office Space</a>James rehttps://www.blogger.com/profile/17243547707465996159noreply@blogger.comtag:blogger.com,1999:blog-950610514704668490.post-25896807747380886192017-02-08T10:18:43.561+11:002017-02-08T10:18:43.561+11:00THIS IS PERFECT FOR MY FIRST GREAT GRANDDAUGHTER D...THIS IS PERFECT FOR MY FIRST GREAT GRANDDAUGHTER DUE IN MARCH. THANK YOU.<br />GRAMMA JOSIEhttps://www.blogger.com/profile/12017761511146748298noreply@blogger.comtag:blogger.com,1999:blog-950610514704668490.post-55596411268155023102017-01-16T10:42:59.867+11:002017-01-16T10:42:59.867+11:00Hi Margaret, happy new year and good luck with you...Hi Margaret, happy new year and good luck with your goals for 2017 - specially the last one. Making time for yourself as a parent of young children ( " me" time and time with friends) is hard enough as it is, and doubly more so when you have a child with a disability. And parental well being is generally neither understood or respected by society, unfortunately. Best wishes & kindest regards to you & your family. DDiannehttps://www.blogger.com/profile/15144180266896805067noreply@blogger.comtag:blogger.com,1999:blog-950610514704668490.post-76734126163572838942016-03-14T11:07:23.846+11:002016-03-14T11:07:23.846+11:00So glad to hear that school is going well. I know ...So glad to hear that school is going well. I know a little boy (in the ECIS program at work) whose parents did not want to send him to the SDS - until they finally came to visit the school, and then they enrolled him straight away! I cannot speak highly enough of the SDS (ok I am slightly biased because I work there too!) but they do run such a fantastic program! Diannehttps://www.blogger.com/profile/15144180266896805067noreply@blogger.comtag:blogger.com,1999:blog-950610514704668490.post-1913333898670503842016-01-24T06:43:19.376+11:002016-01-24T06:43:19.376+11:00Kira McDonnell
I appreciate your comments and you...Kira McDonnell<br /><br />I appreciate your comments and your deep desire to support your friends (and my son). The problem I identified is not a problem with fundraising. The problem is that good intentions, awareness, hard work and luck are not a formula for seeing that quality science moves in the direction of most value to children and adults with 22q13 deletion syndrome. Without qualified and unbiased science guidance, there is a lack of science policy that prevents the POSSIBILITY of a better future from becoming a REALITY. I suspect you run your family finances primarily on priorities and planning, rather than hope and luck. Jack and David deserve at least that much consideration. <br /><br />I don't want to detract any further from the beautiful essay, above. If you want to learn exactly why I feel the research direction is misguided, you may read my blog: arm22q13.wordpress.com. It is about raising a child with 22q13 ds and the science behind it. I invite you to make comments there. My hope is that thoughtful families (and thoughtful friends like you) will begin to understand the importance of guiding research with the level of professionalism that is essential for real progress. I am 30 years into this and have not given up the hope to see science benefit David. But, on the present path, that is not happening. The sooner we fix this part, the more likely Jack will reap the benefits. That awareness is, perhaps, most important. <br /><br />Andy<br /><br />arm22q13https://www.blogger.com/profile/09103084656562425529noreply@blogger.comtag:blogger.com,1999:blog-950610514704668490.post-81209174150548647522016-01-24T06:02:45.336+11:002016-01-24T06:02:45.336+11:00A beautiful and poignant letter.
While I cannot r...A beautiful and poignant letter. <br />While I cannot relate personally as a mother of 3 neurologically "healthy" children, I can relate from the perspective of a family member to a cousin with PMG, MS and autism and as a friend to several mothers of children with varying degrees of autism along the spectrum.<br /><br />I also have the distinct honor and pleasure of calling 13 year old Jack and his amazing family my friends.<br />Jack has PMS (Ring 22). While I know his family in no way "feel lucky" that Jack was given this diagnosis, they have taken the opportunity to look at the cards that were dealt them and chose to have a positive perspective. Rather than sit back and let this extremely rare syndrome go unnoticed they have chosen to bring awareness and possibly some hope to families like yours. <br /><br />I am a big supporter of the Phelan Lucky campaign. I can't be there at 5am when Jack wakes up ready to start his day, every weekend; he likes to sleep in on school days. I can't be there to care for Jack in the way that I know it could really be helpful. What I can do is buy a t-shirt and donate money and share it with my family and friends so they can support it too. Why?Because we are all willing and wanting to help our dear friends and other families with PMS kids.<br /><br />The campaign could have easily been Phelan Love with a heart on Valentine's day or Phelan Hopeful or Blessed or you name it because these are kids that are being diagnosed and families that are living with it.<br /> <br />I can't fully relate to a PMS diagnosis, but I can honestly say that I am PHELAN LUCKY to know Jack and his family. My kids are PHELAN LUCKY to know Jack and to learn so much from him every time they spend time with him. Jack and your son Nicholas and you and all the families and those with PMS have so much to teach the world. Patience, perseverance, determination, unconditional love, understanding, faith and so much more.<br /> <br />My family of 5 is PHELAN LUCKY again this year and we are all working on growing the awareness of the campaign in our community, our schools and spreading the word as far and wide as we can. We encourage our friends to do the same because it is something. Just as the ice bucket challenge brought awareness to ALS, the Phelan Lucky campaign is hope that awareness and research and funding will come to those with PMS.<br /><br />Is it perfect? No. Show me a fundraising campaign that is. It is something. It is hope. It is a chance for more understanding of PMS in the future. It's the POSSIBILITY of more, better, hope. <br /><br />Best wishes to you and your family,<br />Kira McDonnellAnonymoushttps://www.blogger.com/profile/16325838852671527495noreply@blogger.comtag:blogger.com,1999:blog-950610514704668490.post-52755019736444062312016-01-23T09:14:57.492+11:002016-01-23T09:14:57.492+11:00Margaret sees her future with a precocious clarity...Margaret sees her future with a precocious clarity, considering she has only scratched the surface of her journey with Nicholas. (My son, David, is 30.) Some things she supposes may not occur as she predicts. Our children do grow up. They learn to worry. They are child-like in some ways, but older, too. We hope the happy ones remain happy. Many of our kids are happy as youngsters, although not all. Some of that childish self-amusement can remain and Margaret captures that essence beautifully. The two universals that make this essay one that every parent can understand are the desire for a healthy baby and the hope that our adult child will always be happy. "Not Phelan Lucky" is about giving up on the first and learning to appreciate the second. <br /><br />There is another reason for "not Phelan Lucky". This awareness campaign is about fundraising, the fundraising is about promoting science to treat 22q13 deletion syndrome and SHANK3 mutation syndrome, and those efforts for treatment are supposed to be about hope. I don't share that hope. The Phelan community lacks a well-conceived science policy. Without one, money is not well spent. Science, education, healthcare, economic, etc., are complex endeavors and too easily driven by the politics of the finances behind it. Our community lacks professional leadership. Perhaps we should stop operating on "Phelan Lucky" and start "Phelan Professional". That is when I will start feeling lucky.arm22q13https://www.blogger.com/profile/09103084656562425529noreply@blogger.comtag:blogger.com,1999:blog-950610514704668490.post-52004801705329894952016-01-22T13:06:39.323+11:002016-01-22T13:06:39.323+11:00I think you're much closer to seeing the posit...I think you're much closer to seeing the positive side than you think. A wonderful piece of writing from a wonderful person.Anonymoushttps://www.blogger.com/profile/10984056773208742174noreply@blogger.comtag:blogger.com,1999:blog-950610514704668490.post-72859987398273458942016-01-08T16:06:49.773+11:002016-01-08T16:06:49.773+11:00Wow the fish looks fantastic- I remember reading ...Wow the fish looks fantastic- I remember reading about when you bought the tea towels! Great idea! I need a hand sewing project like that...Diannehttps://www.blogger.com/profile/15144180266896805067noreply@blogger.comtag:blogger.com,1999:blog-950610514704668490.post-79085703520157131942015-10-09T03:14:37.696+11:002015-10-09T03:14:37.696+11:00It would be helpful if you could add the size of t...It would be helpful if you could add the size of the quilt, the yardage needed for backing.Anonymoushttps://www.blogger.com/profile/17628404069783388853noreply@blogger.comtag:blogger.com,1999:blog-950610514704668490.post-84254984143859550182015-08-03T16:28:24.931+10:002015-08-03T16:28:24.931+10:00Absolutely looks like a quilt pattern, like the co...Absolutely looks like a quilt pattern, like the colour scheme too!Diannehttps://www.blogger.com/profile/15144180266896805067noreply@blogger.comtag:blogger.com,1999:blog-950610514704668490.post-70698343353502389752015-04-20T10:26:51.230+10:002015-04-20T10:26:51.230+10:00Well said Margaret, it is so true that the way the...Well said Margaret, it is so true that the way the media portrays disabilites and reports on issues such as this school incident is very one sided and without clear understanding or explanation. Likewise I get quite incensed when I read about someone " suffering" from deafness/ autism/ CP etc. - when it is just how they are! One may as well say someone "suffers" from being 5" tall, or having freckles or blue eyes!<br />Hope you all enjoyed you trip away!Diannehttps://www.blogger.com/profile/15144180266896805067noreply@blogger.comtag:blogger.com,1999:blog-950610514704668490.post-13595435547349091092015-01-07T10:08:57.750+11:002015-01-07T10:08:57.750+11:00Big congrats on finishing your Masters, what an a...Big congrats on finishing your Masters, what an achievement! Enjoy settling into the new house and hope you get back to sewing soon. Hope all goes well with the new school year- I can't speak highly enough of the SDS I work at, I am only there one half day a week but have seen so many kids make amazing progress since starting school there. Diannehttps://www.blogger.com/profile/15144180266896805067noreply@blogger.comtag:blogger.com,1999:blog-950610514704668490.post-25949362139327110012014-10-13T23:04:46.722+11:002014-10-13T23:04:46.722+11:00Great ideas! Oilcloth bunting, duh! makes perfect ...Great ideas! Oilcloth bunting, duh! makes perfect sense but I never would have thought of it! Other great glam camping ideas in Kate Ulman's book "Vantastic" . I have an article in a UK craft mag somewhere about an amazing restored mini camper, full or retro glam - will try & find it for you.<br />Diannehttps://www.blogger.com/profile/15144180266896805067noreply@blogger.comtag:blogger.com,1999:blog-950610514704668490.post-5466393315875087732014-06-17T19:45:42.561+10:002014-06-17T19:45:42.561+10:00As you said, a very emotional time indeed. I have ...As you said, a very emotional time indeed. I have not come across PM syndrome before and will be on the look out for any reference to it at work.<br />Diannehttps://www.blogger.com/profile/15144180266896805067noreply@blogger.comtag:blogger.com,1999:blog-950610514704668490.post-84945074463699904852014-06-03T22:46:58.778+10:002014-06-03T22:46:58.778+10:00Good luck with the Hanen course, the Hanen program...Good luck with the Hanen course, the Hanen programs are great. Good to hear an update on Nicholas. You are doing a great job juggling family/kids, work and study - hope you get some time in for some sewing too!Diannehttps://www.blogger.com/profile/15144180266896805067noreply@blogger.com