tag:blogger.com,1999:blog-18580598584794964462024-02-20T08:22:17.756-08:00in our hoUSe....!A Parent's Perspective of Usher Syndrome.Scarf It Uphttp://www.blogger.com/profile/14714633465442678992noreply@blogger.comBlogger23125tag:blogger.com,1999:blog-1858059858479496446.post-18782510751137779842014-09-30T08:00:00.001-07:002014-09-30T08:00:12.909-07:00Scarf It Up!: Salvaging a Disaster - or TWO!!!!Disasters of the Week!<img src='https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLqnEQvzpDJBdzvVxIiayorE__H_iu0Xz1Qi0toUAIBD9QI36SvMYGlMRczb-vOeoao1lyNoM0hABEpHNMiExq3ZqfiPwn0S7HbKmYsQD_6tG9vAza0KWrTNhXp81DU-7gM7d2sNgO2m2-/s1600/IMG_1790.jpg'/><br/>See the rest of the disaster here. The salvaged product is in the works…photos later!<br/><a href="http://scarf-it-up.blogspot.com/2014/09/salvaging-disaster-or-two.html">http://scarf-it-up.blogspot.com/2014/09/salvaging-disaster-or-two.html</a>Scarf It Uphttp://www.blogger.com/profile/14714633465442678992noreply@blogger.com0tag:blogger.com,1999:blog-1858059858479496446.post-14498764148876832392014-09-25T07:29:00.001-07:002014-09-25T07:29:16.097-07:00Scarf It Up!: State of the Art, Art of the State at Cameron Art Museum - September 20 - February 12<img src='https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBmx9U2pgtGvDIlU-V3ioco2KSBlh7Cir7DKtOes9W7SsSCT1NNNVGs5jpWCOr3jq5Sq14EwTJYKtcWW0nv9cQd3e3qw2-0YRMGQwjSGQhCLtt73If7BucgTzIBnQCBez_PNiJu6QW-PfJ/s1600/10405482_698300023598130_2552895577528953967_n.jpg'/><br/>Just a phenomonal project!<br/><a href="http://scarf-it-up.blogspot.com/2014/09/state-of-art-art-of-state-at-cameron.html">http://scarf-it-up.blogspot.com/2014/09/state-of-art-art-of-state-at-cameron.html</a>Scarf It Uphttp://www.blogger.com/profile/14714633465442678992noreply@blogger.com0tag:blogger.com,1999:blog-1858059858479496446.post-35459746259584693692014-09-23T04:10:00.001-07:002014-09-23T04:10:39.435-07:00<br/>New, extended hours on Sundays at Port City Pottery & Fine Crafts - at least through the holidays. Mon-Sat: 10-5:30; Sun: 11-5<br/><a href=""></a>Scarf It Uphttp://www.blogger.com/profile/14714633465442678992noreply@blogger.com0tag:blogger.com,1999:blog-1858059858479496446.post-67848422720748159302013-06-07T06:39:00.003-07:002013-06-07T06:39:41.374-07:00Surgery Day for Roberta's Cochlear ImplantMassachusetts is cold and rainy, the perfect scenario for sitting and waiting in a dreary waiting room at Mass Eye & Ear Infirmary! After 14+ hours in the car the last two days with a crying, whimpering dog, this place seems unusually quiet.<br />
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We were up at 3:45, out the door at 4:15 only to return after about 2 miles to retrieve forgotten items. Mad race to be here at 5:30 as requested. Hurry up and wait for an eternity before she's even called in. Finally we are called in to be with Roberta in pre-op, saw the nurse, anesthesiologist, surgeon, etc. They took her at 7:30 and now we wait. It's only 9:30 now, and I'm already bored and anxious!<br />
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Later!Scarf It Uphttp://www.blogger.com/profile/14714633465442678992noreply@blogger.com0tag:blogger.com,1999:blog-1858059858479496446.post-65332924591610747192013-06-05T05:29:00.000-07:002013-06-05T05:29:07.993-07:00Roberta's Journey to Hearing Begins on Friday!We'll be there! So exciting! So excited! But nervous too! More later!Scarf It Uphttp://www.blogger.com/profile/14714633465442678992noreply@blogger.com0tag:blogger.com,1999:blog-1858059858479496446.post-61454014480058709862013-05-12T07:52:00.000-07:002013-05-12T07:52:05.162-07:00Happy Mother's Day!My daughters amaze me! One is a mom - and a great one at that! The other is not a mom, sadly; she'd be a great mom too! They have showered me with many blessings throughout their lives. This Mother's Day is no exception!<br />
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Andrea has started a new blog called "<a href="http://eyecanthearu.com/">Eye Can't Hear You!"</a> (http://eyecanthearu.com) to provide information and personal history to the hearing and/or visually impaired. This is her post for Mother's Day!<br />
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If you are a Mom with a disability, take the time to thank your mother for all she did for you…</div>
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If you are a Mom with a child who has a disability, thank you for doing all you do…</div>
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Eye Can’t Hear You! would like to wish all the moms out there a Happy Mother’s Day.</div>
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<span style="color: #993366;">_________________________________________________</span></div>
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<em><strong>To All the Moms with Kids/Adults </strong><strong>with Special Needs</strong></em></div>
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<em> You were there for me through thick and thin</em></div>
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<em>You never gave up when I was sick</em></div>
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<em>When you were told I had special needs</em></div>
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<em>You knew I was special, and you are special to me.</em></div>
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<em>I know why you were chosen . . . for your capabilities.</em></div>
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<em>You are my teacher, advocate, and taught me many abilities.</em></div>
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<em>You cry and smile when I succeed.</em></div>
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<em>I want to thank you for all you do for me.</em></div>
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<em>Because you are special, the most special Mom for ME!!!</em></div>
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(Family Network on Disabilities <span style="color: #ff9900;"><a href="http://fndfl.org/" style="color: #0c5390; text-decoration: none;"><span style="color: #ff9900;">http://fndfl.org/</span></a><span style="color: black;">)</span></span></div>
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<span style="color: #ff9900;"><span style="color: black;">So true and so special! I'd like to think I helped along the way - for both daughters are self-respecting and other-respecting fully-functioning adults who hold responsible jobs, manage themselves and their family, and now are helping others through blogging and in many other ways.</span></span></div>
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<span style="color: #ff9900;"><span style="color: black;">If you have an interest in resources, aids, info, and hope for those with visual or hearing disabilities (or both), I hope you'll follow her <a href="http://eyecanthearu.com/">blog</a> - she posts every day! (More than I can say for this blogger!)</span></span></div>
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<span style="color: #ff9900;"><span style="color: black;">Stay tuned to this blog, as we are about to embark on an exciting journey with Roberta, who will have surgery on June 7 for a <b>cochlear implant</b>! I plan to document that along the way! Hope you'll follow along with us!</span></span></div>
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Scarf It Uphttp://www.blogger.com/profile/14714633465442678992noreply@blogger.com0tag:blogger.com,1999:blog-1858059858479496446.post-76930828498974357722013-01-28T16:34:00.002-08:002013-01-28T16:34:28.498-08:00Reality Check! Update!<b>The good news: </b><br />
The irritation in Roberta's eye appears to be a scratch on the surface of her eye, probably due to soap in her eye after crying over a sad movie. It wasn't a meltdown as first thought, but rather just the sadness of "Steel Magnolias." Bad choice for the moment!<br />
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<b>More good news: </b><br />
Her vision today at the check-up was 20/25....even better than the day following surgery! And she maneuvered so much more easily at her job as school psychologist today, now being able once again to see all the way down the hall, recognize faces at a distance, read lips at a distance, not have to wear sunglasses in her windowless office or in her sunny home. She navigated with ease and is thrilled about that!<br />
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<b>The reality:</b><br />
There are so many things operating that can affect RP, and everyone with this condition is different, and so is the rate, extent, and progression of disease. We KNOW that she'll have to have YAG laser surgery as a follow-up at some point. Could be a year; could be a month post-op. This surgery and its risks are described <a href="http://www.uwhealth.org/healthfacts/B_EXTRANET_HEALTH_INFORMATION-FlexMember-Show_Public_HFFY_1126651607431.html">here</a>.<br />
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There is the risk of CME (Cystoid Macula Edema) or swelling of the retina or macula after cataract surgery. Here is info about <a href="http://www.kellogg.umich.edu/patientcare/conditions/cystoid.macular.edema.html">that</a>. The critical period for this swelling is between four and six weeks post-surgery. The risk of retinal detachment remains for up to six months.<br />
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For those of you who have had cataract surgery (but not RP), there are some of these risks for us as well, but most people - who are generally MUCH older than Roberta) - undergo cataract extraction with no or few complications.<br />
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I think that the benefits for Roberta outweighed these risks, but now the surgery is DONE, her vision has improved significantly, and she is delighted with the results. She has undergone a miracle to restore much of the central vision she has lost over time. She has experienced TODAY with this improved eyesight; she/we (her father and I) will take one day at a time along with her (though at some distance - like 850 miles!) She will learn to value each day in the moment and not look back. And if tomorrow that changes, then she needs to be grateful for the blessings of these days right now. I pray the good times will continue to roll for a long, long time!<br />
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<br />Scarf It Uphttp://www.blogger.com/profile/14714633465442678992noreply@blogger.com1tag:blogger.com,1999:blog-1858059858479496446.post-56270265364723673562013-01-28T10:35:00.002-08:002013-01-28T10:35:47.898-08:00RP and Cataract SurgeryPeople with Usher Syndrome face progressive hearing and vision loss. The vision loss is due to Retinitis Pigmentosa (RP) that causes increasing loss of peripheral vision, while the central vision - for the most part - is unaffected by the RP. That doesn't mean that the central vision can not be affected by other visual acuity issues. Near- and far-sightedness can usually be corrected (or somewhat corrected) with glasses or contact lenses. But cataracts are more common with RP at a younger age than with normal-sighted folks (like me!)<br />
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There is controversy and lack of consensus as to whether or not cataract surgery is advisable at all for patients with RP. In fact, our daughter's retinal specialists have STRONGLY advised against it! However, the retinal specialists she's seen, while long well-known in their field of research, are just that. They are not clinicians; they don't deal with the reality of one's life or the functionality of vision based on the personal, professional, social/emotional life of their patients. So....after consulting with many, by phone, email, in person, and doing extensive online research, she went to a highly recommended cataract surgeon who has experience with such surgery on RP patients and has, in fact, done a number of them against the recommendation of our daughter's retinal specialists - with success!<br />
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Roberta made this decision herself, deciding to go forward with the surgery and take the risks associated with it to have a chance at extending her work life, which had become severely impacted quickly over the last 8 months, due to loss of acuity, extreme sensitivity to lights and glare, and distorted images from the affected eye. I think when a hearing-impaired person who relies heavily on lip-reading can no longer do that across a table, it's natural to want to do anything to improve that. Imagine the frustration of struggling to hear AND see when just months before, you had a good handle on the disabilities imposed by this condition. Usher Syndrome is an inherited condition, caused by both parents carrying a recessive gene for it. Our daughters both have this syndrome, Type IIC, with absolutely no known history of it on both sides of our families. <br />
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So....the surgery took place last Wednesday, a simple procedure that had us in and out of the surgery center in very little time. She was alert (no conscious sedation) and pain-free when we left there, and she was immediately thrilled with the results. A follow-up appointment the next day revealed that her vision was 20/30 unaided in that eye as opposed to the 20/200 pre-surgery with her contact lenses. WOW! WOW! WOW!<br />
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We left her yesterday to return home, feeling comfortable that she was OK to be on her own and to return to work today. So far, so good. Stay tuned, however, for the follow-up to this story, for there is an issue today for which she is going to see the surgeon. Not sure what's up, but if you're reading this, please continue to pray for her. I'll report once I know more, or you can follow along on <a href="http://facebook.com/scarfitup">FB</a>.Scarf It Uphttp://www.blogger.com/profile/14714633465442678992noreply@blogger.com5tag:blogger.com,1999:blog-1858059858479496446.post-84675590379198051732012-09-02T10:30:00.001-07:002012-09-02T10:31:34.230-07:00A Special Book and AuthorMany thanks to a new neighbor / court reporter who took a workshop on transcription for the hearing impaired and then loaned me a book, highly recommended, on which the workshop was designed and the author was the presenter. The author describes her personal journey from hearing to profound deafness and back into the world of hearing as a result of a Cochlear Implant (CI). Author <a href="http://www.arleneromoff.com/">Arlene Romoff </a>calls it a "modern day miracle" in her second book, <i><a href="http://www.amazon.com/Listening-Closely-Journey-Bilateral-Hearing/dp/1936140217/ref=sr_1_1?ie=UTF8&qid=1346606907&sr=8-1&keywords=listening+closely">Listening Closely</a></i>. This is actually the second part of her journey, documenting the demise of her first CI and a reimplantation as well as her progression to becoming a binaural hearing person once again. I have been moved to order her first book, <i><a href="http://www.amazon.com/Hear-Again-Back-Cochlear-Implant/dp/0967784301/ref=sr_1_1?s=books&ie=UTF8&qid=1346606933&sr=1-1&keywords=hear+again">Hear Again</a></i>.<br />
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Ironically, the hearing aid dealer we dealt with in RI, when we were in the throes of FOUR hearing-impaired ears, called his business "Hear Again!" While visits there were always traumatic for me, he and his wife and staff ran the most welcoming service, always made me laugh, even while dealing with difficult life and life term events. I will always be grateful to the late Reno Bellafiore and his family.<br />
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And it's important to realize that while we were struggling to deal with the realities of our children's hearing loss in the 70s, others were in the process of developing the so-called "bionic ear." The results of those scientists, researchers, and medical personnel are that CIs have become more and more perfected and available to restore "hearing" to deaf and hearing-impaired individuals across the world. I had always hoped there would be something in my lifetime - and certainly within my daughters' lifetime - that would make it possible for them to "hear!" <br />
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It's important to realize that CIs do NOT correct hearing, not in the way that eyeglasses can correct vision (sometimes), but that one does actually have to learn to hear again. Arlene Romoff, in her well-written and informative books, describes sensitively and in great detail the process by which one relearns to hear and communicate with the hearing world. The social/emotional components of the transition are handled equally as well. It is a fascinating read for anyone considering a CI, or for those, like myself, who travel the journey along with their afflicted offspring.<br />
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As one of my daughters has committed to CI implantation next June, I am most interested in reading Arlene's story. I posted about her books on FB yesterday and then searched for her within that venue. I found that she has a personal profile but not a business page. I sent her a message along with a friend request, which she immediately accepted, visited my Scarf It Up FB page (and "liked" it). As we began a dialog via FB messages, I informed her of my interest in her story and told her of my daughters' Usher Syndrome and that they manage a FB Community called, Usher Me In. She immediately "liked" that page too, and I hope she'll be a follower and contributor to that effort. Thank you, Arlene!<br />
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Also somewhat ironically, as I was driving home from work at my co-op gallery, I heard on the radio a report about a <a href="http://www.newjerseynewsroom.com/healthquest/bionic-eye-transplanted-in-australia">bionic eye that has been developed in Australia</a>, for use in RP patients. Somehow I knew 40 years ago when we first started this journey that there would be assistance for the likes of my daughters, and hopefully I will personally see and hear and experience all this for my daughters!<br />
<br />Scarf It Uphttp://www.blogger.com/profile/14714633465442678992noreply@blogger.com0tag:blogger.com,1999:blog-1858059858479496446.post-86917205268194217792012-08-08T05:11:00.003-07:002012-08-08T05:13:13.383-07:00The Frustration Continues!Life can sometimes feel like a living nightmare soap opera! Just when you think things are status quo - after accepting what is over a period of time - a new kick comes into play. In the last week, there have been TWO such knock-downs, one for each of our daughters:<br />
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<li>One learned that her hearing has declined significantly in one ear. Consideration of cochlear implant has been advised, which she is very reluctant to consider.</li>
<li>The other learned that cataracts are the cause of her diminished vision. Surgery in the case of RP patients is riskier than the norm, and the opinions on their treatment are varied and horribly confusing.</li>
</ul>
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Both have jobs they can't afford to lose and parents who can never stop worrying, particularly as WE get older and realize that we can't take care of their needs forever! I guess this is a constant for most parents. We've spent the last week researching the best retina specialists, cataract specialists, and comparing the two major brands of cochlear implants. Confusing and exhausting!<br />
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Any personal recommendations will always be appreciated!</div>Scarf It Uphttp://www.blogger.com/profile/14714633465442678992noreply@blogger.com0tag:blogger.com,1999:blog-1858059858479496446.post-41936436767103635752011-11-17T06:08:00.000-08:002011-11-17T06:08:29.446-08:00There IS Hope!!!I've been remiss and haven't posted here for quite a while. Life and other stuff (like the stuff I make!) have gotten in the way. But always I come back to the issue of Ushers Syndrome - because it affects my life through my daughters. They are both amazing women with fulfilling lives who seem to deal well with their condition(s). It takes just an incident or posting on FB or blog posting or conference call to bring the whole thing home again - for me! But I don't live it EVERY single day of my life. I admire my girls and all those who have vision and/or hearing issues - for the struggles they most often endure silently every single day of their lives.<br />
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I listened on Monday to a conference call/visual presentation by <a href="http://hearing.harvard.edu/affiliates/rehm.htm">Heidi Rehm</a> of the Harvard Medical School, on the "Why's" of genetic testing for Usher Syndrome, the reasons for the cost, and the time it takes to secure the results. Is it worthwhile? Absolutely! Very costly, yes! But just today I was alerted to a new research study approved by the FDA for <a href="http://eyedocnews.com/006188-gene-therapy-trial-for-retinitis-pigmentosa-based-on-usher%E2%80%99s-syndrome-to-begin/">US Type 1b</a>. So that means that it is very important to KNOW what type of US one has - to be able to be included in the study. We know that our daughters have Type 2, but we DON'T know which one. It will be important to know in order to be able to avail themselves of studies down the road.<br />
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So much has transpired in the world of genetics for US in the last 22 years since Roberta's diagnosis. Progress comes slowly, but there is hope, and I always want to hold onto that.<br />
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Then I read on FB of Roberta's mishap at school and was devastated for her. No long-lasting physical ill-effects but the emotional ones wear on and on. It hurts so much when a mom can't FIX what hurts! <br />
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And this morning I caught up on my reading of <a href="http://doublevisionblog.com/">DoubleVisionBlog</a>, in which twins are undergoing an unusual Eastern medicine treatment for RP, and so far the results are outstanding. And scary! And so well-written. Fear of hope is explored as well as some details of this extraordinary treatment process. I urge you to read it if you have any interest at all in RP (retinitis pigmentosa).<br />
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Let there be hope - as fearful as that is!Scarf It Uphttp://www.blogger.com/profile/14714633465442678992noreply@blogger.com2tag:blogger.com,1999:blog-1858059858479496446.post-25475015066766677912011-09-28T16:46:00.000-07:002011-09-28T16:46:29.109-07:00Vision Walks! Fundraising for the Foundation Fighting Blindness!My girls are amazing! I am always proud of them but now more than ever. They both decided it was time to get involved in fighting for their own cause. The <a href="http://blindness.org/">Foundation Fighting Blindness</a>' <a href="http://www.fightblindness.org/site/PageNavigator/VisionWalk_Homepage">Vision Walks</a> to raise funds for research on a variety of blindness diseases and conditions seemed to be right up their alley. They BOTH committed to doing something they've never done before - establish a "walk team," set fundraising goals, and solicit funds to support their respective walks.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgB-cmxO2Q_XEHEX0rw6bFzQjf2o_WfHDgpOi1gBw3MURBfVtc4EXIpBoDNmDmh38k7lRKupSHc67A-UzoFTFh2XK4e_gp9mPOM4uWBldtng2RbWrYFh57HxRKCjtXwACpx1C5ccEvqVHE/s1600/294171_1896477785309_1642551944_31483261_1391512446_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgB-cmxO2Q_XEHEX0rw6bFzQjf2o_WfHDgpOi1gBw3MURBfVtc4EXIpBoDNmDmh38k7lRKupSHc67A-UzoFTFh2XK4e_gp9mPOM4uWBldtng2RbWrYFh57HxRKCjtXwACpx1C5ccEvqVHE/s1600/294171_1896477785309_1642551944_31483261_1391512446_n.jpg" /></a></div>Andrea is walking in Greensboro, NC this Saturday; Roberta is walking in Boston in late October. BOTH have met their $$$ goals, raising a combined total of almost $4000.00, and both will walk with family and friends. Andrea and her family made tie-dyed tee-shirts for their team members with the <a href="http://www.facebook.com/UsherMeIn?ref=ts">Usher Me In</a> logo on the front.<br />
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My only regret: I can't participate in either walk with them for a variety of reasons, but I will be there in spirit. I've committed a percentage of my <a href="http://www.facebook.com/scarfitupwilmington">Scarf It Up!</a> sales to this effort through the holidays. If you'd like to see more of my work, please view my <a href="http://www.flickr.com/photos/scarfitup/">flickr</a> pages, and if you're interested in purchasing anything, contact me via <a href="http://facebook.com/scarfitup">Facebook</a>. Many thanks to all those who have supported Andrea and Roberta in this effort and who have purchased my creations!Scarf It Uphttp://www.blogger.com/profile/14714633465442678992noreply@blogger.com0tag:blogger.com,1999:blog-1858059858479496446.post-70243971039992077702011-09-05T07:05:00.000-07:002011-09-07T19:20:42.819-07:00Musings of a Mom!I've always <i>tried</i> to maintain a positive attitude towards most everything in life. It is not because I am a person of faith or that my family of origin was positive in nature, or that I married a positive person. These were NOT the case! I guess, despite all that, I have my own sense of looking at life to uncover the best possible means to be happy or improve my own situation or that of my loved ones. Considering the environment in which I've lived 60+ years, I manage to be positive <i>most</i> of the time. And so it is in dealing with disability and family health issues that have been part of my adult life for 40+ years.<br />
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I do get depressed from time to time! And I do take medication for periods of time when I need it. And I do talk with a therapist on occasion - also when I know I need it. In other words, I recognize the signs and symptoms, and I take care of myself. I have to....because I am needed. I can't help those in the family who need it if I am not whole and sane. (Tennis and my fiber art help too!)<br />
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Somehow, and this seems rather ironic, I've gained strength from the many setbacks our family has encountered. For example.....the knowledge that one daughter would fail her DMV vision test and have to give up her driver's license - although we knew this was coming - was initially devastating. A life-altering experience that has been characterized by relief, rather than angst. I worried more about this lack of driving permission than her driving itself. And she has dealt with it beautifully - hiring drivers for work, appointments, and errands, and prevailing upon friends and neighbors for other needs and entertainment. I should have been worried about how safe she was (and others!), and so now I realize why she's experiencing this as a HUGE relief, rather than a HUGE burden. And she's handled it with aplomb! So proud! I pray that our other daughter will accept her fate when it happens with similar equanimity.<br />
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Each person handles life's experiences differently. That's a function of personality and one's personal philosophy. How do I handle the various tribulations of my life? Not always with aplomb! Not always with positivity! Not without falling sometimes! And not without failing sometimes. But I realize that I have a process that seems to work. If shared, this process can perhaps help others in dealing with their own trials. But that's where personality comes into play, I think. <br />
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Here's what I've done - even before I realized it was indeed MY process!<br />
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My initial reaction to adversity is not always good or positive or effective. In an emergency (such as the many cardiac issues encountered with my DH), I am usually OK through the crisis and fall apart after the critical period is over. With disability issues for my children, I am initially devastated, shocked, frightened, and immobilized. I <b><i>ALLOW</i></b> myself 24 hours (but generally no more) of self-pity. Sometimes it's hard to "snap out of it" (as some have advised!) If it persists for more than a few days, then I know it's time to resort to other means - medication first and then arrange to meet with my wonderful, compassionate but direct LISW. Generally by the time I get to the appointment several days later, I have snapped out of it, and embark on a plan to DO and COPE rather than STEW and MOPE! This has proven effective in so many instances! But this is MY personal plan - it will not work for everyone.<br />
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The most important thing is to find the resources and help to develop strategies that WORK for you! For some, this might be faith in God, prayer, support groups, involvement in disability organizations, writing, helping others, presenting, educating, or any number of other engagements that WORK! Helping others always works wonders, so if you're reading this and having difficulty dealing with Usher Syndrome, low vision, hearing loss, any other form of disability, disenfranchisement, disaster, or distress, consider these possibilities and SHARE them with others.<br />
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This blog is proving therapeutic for me but with the hope that it will perhaps help others too. Comments welcome!Scarf It Uphttp://www.blogger.com/profile/14714633465442678992noreply@blogger.com4tag:blogger.com,1999:blog-1858059858479496446.post-21891408050130593642011-08-18T15:18:00.000-07:002011-08-18T15:18:50.467-07:00What can you see?<div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><a href="http://www.bioinformaticsatschool.eu/images/rp.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="153" src="http://www.bioinformaticsatschool.eu/images/rp.png" width="400" /></a></div><br />
I've never asked my daughters this question before! Since one of them is visiting us this week, I decided to now ask this question and one other. We were sitting in our office area - she on the floor; DH and I in our respective chairs at our computers. I turned to look directly at her and said: "Look straight at my nose and tell me what you see." My elbows were resting on the arms of my chair, and I was about 5' away from her. She <i><b>could</b></i> see my face and my extended elbows, the tops of my knees, and she was aware of the light from the window behind me and the stained glass disk hanging in the window. She could <b><i>NOT</i></b> see my legs below the knees, the floor, the top of my computer cabinet, or anything on the wall above it. <br />
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<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="http://upload.wikimedia.org/wikipedia/commons/d/d5/Retinitis_Pigmentosa-_tunnel_vision.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="http://upload.wikimedia.org/wikipedia/commons/d/d5/Retinitis_Pigmentosa-_tunnel_vision.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Retinitis Pigmentosa<br />
ONE of the aspects of Usher Syndrome</td></tr>
</tbody></table>The limits of her field of vision shocked me. I'm not really sure why because we knew that she had recently had to give up her driver's license because she could not pass the visual field test. She "never saw the moving light at all!" Normal peripheral vision is close to 180 degrees. Hers is about 30, so we're told.<br />
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This prompted my next question - one I have been reluctant to ask, but she willingly answered. "Are you <b><i>relieved</i></b> to no longer be driving?" I had thought her need to give up driving would be a crisis, a critical life-altering experience to which she would VERY slowly adjust, find her drivers as necessary, and go into some type of immediate - and understandable - depression. Instead, she has been more pro-active than usual, found people willing to provide services in her home (the hairdresser, the dog groomer, the speech pathologist), found drivers for work, back-up drivers when needed, friends and neighbors to drive her to shop and to attend to daily needs, and <b><i>SHE IS VASTLY RELIEVED</i></b>!!!<br />
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I had no idea how stressful driving had become for her. She had for several years given up driving at night and in rain, but honestly, she and I had driven several times in recent years between NC and New England, sharing the driving almost equally. She never drove in the NY - DC stretch, but who likes that stretch of 95 anyway? I NEVER felt uncomfortable with her driving or concerned for her or my safety. <br />
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Well, all that's behind her now, and she has handled the changes with aplomb. It has not been a crisis; it has been a gift. By her own admission, she manages things in her life much better on a deadline and so her driving needs have been addressed and arranged - all before her vacation in NC! I am immensely proud!Scarf It Uphttp://www.blogger.com/profile/14714633465442678992noreply@blogger.com0tag:blogger.com,1999:blog-1858059858479496446.post-47745893596736745432011-08-14T04:29:00.000-07:002011-08-14T04:29:30.956-07:00A "Funny" thing happened at the dentist......Well, you wouldn't think anything "funny" would happen at the dentist, but indeed something did that offers possible hope for low vision sufferers. I had broken a filling on a Friday night - great timing! Fortunately it didn't bother me, but on Monday I called and got an almost immediate appointment. Wasn't even dressed when I got the call-back.<br />
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So I'm sitting in the waiting room reading <i><u><a href="http://www.ourstate.com/">Our State</a></u></i> magazine, a beautiful publication that I vow to subscribe to. There is an advertisement from an eye specialist/researcher/optometrist in WILMINGTON who has developed treatments for various eye diseases and conditions, primarily macular degeneration. I am intrigued, but also skeptical. What legitimate medical person actually advertises? So I ask the receptionist if she could make me a copy. When she sees what it is, she says, "Oh, he's my doctor! And he's wonderful!" And he's the doctor of the dentist too as well as a number of other staff members. He had his practice near the dentist's for many years until moving to Wilmington.<br />
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I can't wait to get home to check him out on the Internet. And here is what I found: <a href="http://dredwardpaul.com/">Dr. Edward Paul</a> has in fact "successfully treated individuals with Macular Degeneration (AMD), Diabetic Retinopathy, Albinism, Stargardt's Disease, Optic Nerve Disorders, Nystagmus, Myopic Degneration, Macular Holes, Retinitis Pigmentosa, PXE, Strokes, and many other eye conditions that cause Low Vision." And he offers free phone consultations.<br />
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I called! Although he seems to specialize in macular degeneration, he does indeed work with retinitis pigmentosa patients. They were able to arrange an appointment while Roberta is visiting us next week! While I am somewhat cynical by nature and hold out no expectations from this consultation, I am very interested to know how he works, what he has to offer, how he's measures his success, and if there is some hope to restore enough vision to enable Roberta to recover and retain her license for a while longer. We shall see (no pun intended!), and I will report back afterwards.<br />
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Oh....and my broken filling was easily repaired - no drilling, no root canal, 20 minutes, and done! An interesting morning!Scarf It Uphttp://www.blogger.com/profile/14714633465442678992noreply@blogger.com1tag:blogger.com,1999:blog-1858059858479496446.post-24293098394287091612011-08-07T11:41:00.000-07:002011-08-09T13:10:08.245-07:00VisionWalk!Both daughters have gotten themselves fully engaged right now in the fight against blindness. Both are participating in the <a href="http://blindness.org/">Foundation Fighting Blindness</a>' VisionWalks, one in Greensboro on October 1 and one in Boston on October 29. They have set up their teams and are looking for team members and supporters, those who'd like to walk (and get their own sponsors) and those who can't be there to walk with them but who would like to make a donation on their behalf.<br />
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Andrea's page is <a href="http://www.fightblindness.org/site/TR/VISIONWALK/VisionWalktr?px=2292518&pg=personal&fr_id=4302">here</a>! Roberta's is <a href="http://www.fightblindness.org/site/TR/VISIONWALK/VisionWalktr?px=1578104&pg=personal&fr_id=4281">here</a>! You might recognize these photos from their personal pages.<br />
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If you are so inclined and would like to donate to a cause that funds research for all degenerative vision disorders, you will find links on their respective pages. At this time, there is no treatment or cure for Usher Syndrome, and research funding is needed. Your support, in prayers, thoughts, and deeds, will all be appreciated by our family and so many others who suffer from Usher Syndrome and other deaf/blind issues.<br />
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Thank you so much!Scarf It Uphttp://www.blogger.com/profile/14714633465442678992noreply@blogger.com0tag:blogger.com,1999:blog-1858059858479496446.post-33562872739072790692011-08-02T05:30:00.000-07:002011-08-09T13:11:42.665-07:00The SECOND Diagnosis!Roberta was four months old when we learned that Andrea was hearing impaired. It was indeed a difficult time. And I felt immensely alone! (Absentee husband due to his career change goals and subsequent grad program required long days of travel to Boston and back; when he WAS home, he was holed up in the basement studying!) We needed to learn quickly how best to promote communication skills in Andrea, and I still had to care for an infant.<br />
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And I was desperate to know that our baby had normal hearing! Testing began almost immediately - at my insistence. So at 4, 7, and 11 months, her hearing tests were "inconclusive!" Small comfort there! The axe fell at 13 months on a day I will never forget (but I do forget the date). What I remember most was how I reacted once in the car with the two girls. I completely broke down and sweet Andrea said to me, "Mommy, what's wrong?" The only way I could make a 4 year old understand was to reply, "Roberta needs to wear hearing aids too!" to which Andrea said, "Oh, goody, now she'll be like me!" How sweet! But for a mom, this was devastating news.<br />
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So once again, thanks to the <a href="http://www.willierossschool.org/">Willie Ross School for the Deaf</a> in Longmeadow, MA, we received training in assisting our children with language acquisition, speech and articulation through play, and other activities to encourage and enhance communication. Willie Ross was an oral communication school for the deaf, so we were naturally encouraged to teach our children the tools for oral language, rather than signing. What did we know? N O T H I N G !!!!<br />
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But as preciously stated, this decision turned out to be the best one for our girls - they will tell you so today. I'm not sure how that will play out in the future, if/when they are no longer able to see well enough to read lips, but it was correct then and still is. <br />
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The early years were tough! When Andrea was five and Roberta 2.5, we moved from MA to RI - where my husband finally found a job in his new field of hospital administration. Three+ years of little income (I substitute taught on occasion) were fraught with tension of newly discovered child disability, absentee husband, career change, and now a move to a state where we had no family, no friends, no ties at all.<br />
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But the move to Cranston, RI was a blessing! We landed in a cute little neighborhood with lots of kids and friendly neighbors who became fast friends over the years. Children of all ages played together on the street, in our homes, and the families socialized frequently. It was safe and fun for all of us! Although there was a neighborhood school, where Andrea attended kindergarten for a few months, services for the hearing impaired were provided at another local school, so that was arranged for her first grade. Roberta went to the local YMCA for preschool. Mrs. Jean Wilson was the invaluable teacher of the deaf through most of the girls' elementary school years - in a pull-out program - for speech and language and as liaison between us and the teachers. It was wonderful! And she was the mom-substitute for me. I could call her at any time with questions, concerns, etc. And Mrs. Hoffman was Roberta's pre-school teacher for three years. She was another godsend!<br />
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Mrs. Wilson passed away when Roberta was still in her care in elementary school - a sudden and very untimely death. We all mourned her passing forever - since the replacement left something to be desired, and neither the girls nor I liked her very much. Thanks to Jean Wilson, both girls were quite independent and by that time needed less assistance and instruction. Besides....both girls at this point HATED both the replacement and the very obvious attention and impression being taken out of class made on their classmates. So while IEPs were always in place for both of them through their public schooling, they availed themselves less and less, and that worked!<br />
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The constant interaction with neighborhood kids, who accepted them wholly and helped them in every way, was a bonus. I am forever grateful to Mary Joan and Earl, Linda and Joe, and Marcia and Joe for their tireless support of our family. And the move to RI brought me to a mother's group at the RI School for the Deaf that changed my life, even though the girls were never schooled there.<br />
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To be continued.......!Scarf It Uphttp://www.blogger.com/profile/14714633465442678992noreply@blogger.com2tag:blogger.com,1999:blog-1858059858479496446.post-75351331250201834932011-07-27T08:51:00.000-07:002011-08-09T13:12:52.917-07:00In the News.....!In today's local Wilmington NC paper, <i>Star News</i>, there is an interesting article that speaks to the long-standing issue of oral communication versus American Sign Language (ASL) for the deaf and hearing-impaired. I couldn't find a link to the story in our paper, but here is the <a href="http://www.ocala.com/article/20110726/ZNYT02/107263033?Title=Among-Twists-in-Budget-Woes-Tensions-Over-Teaching-the-Deaf">link</a> from another region's newspaper. <br />
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As parents of hearing impaired children who are now grown and in middle age (WOW! That makes me OLD!!!), we had to make a decision many years ago as to whether or not we wanted them to sign or learn as much oral language as possible. We decided they would live in the hearing world. For us, it never was a huge decision, but I realize now how radically different their lives would be - and ours as well - had we made the decision to education them in a school for the deaf. We knew next to nothing about deafness and hearing loss; we had no idea of the world of differences between deaf culture and hearing or of the cultural clashes that exist. It was years later, when I was in a Masters program in Speech Pathology (never finished!) while researching and writing extensively on the psychology of deafness, that I gained insight into this intense rift in the hearing-impaired community. And that research convinced me that we had indeed made the right decision.<br />
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It obviously turned out to be a correct decision for OUR children - who were not deaf at birth, but rather mild to moderately hearing-impaired at the time of their diagnoses. We later learned of the progressive nature of their hearing loss, and then much later of the syndromic effect of Usher. I believe that some children need the services of a school for the deaf, need to learn to sign and use multi-modal means to communicate - but not just with the deaf world. I believe that all deaf and hearing-impaired persons must learn to exist in society, be fulfilled by their educations, careers, family life, and social interactions. My children today thank us and would tell you that the decision we made so many years ago has worked for them.<br />
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That is not to say that our decision is the right one for everyone. It is not my intention to fuel the fire here. I would be intensely opposed to the abolishment of schools for the deaf. Mainstream education is not for all handicapped individuals; there is much to be gained from deaf education. But I do believe that such schools, where ASL is taught exclusively - to the exception of oral communication training - do little to bring deaf individuals into the society at large.<br />
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Do I wish my children had learned to sign <b>in addition to</b> their oral skills? Now I do! Because now I know that they might need it as they struggle more and more with their vision AND hearing. Roberta studied it in college (actually met her former professor at the Usher Syndrome Family Conference earlier this month!), but she has never used it either personally or professionally. As a former foreign language teacher, I know that disuse leads to no use! Can they learn it now? Of course, if motivated to do so. We shall see.....!Scarf It Uphttp://www.blogger.com/profile/14714633465442678992noreply@blogger.com0tag:blogger.com,1999:blog-1858059858479496446.post-83799944291780049512011-07-25T05:01:00.000-07:002011-08-09T13:15:58.448-07:00The FIRST Diagnosis of Hearing Impairment! The Early Years!Please excuse the ramblings here. While I've often thought of writing about life with two hearing-impaired children, I hadn't quite planned to do it at this point in my life. But I guess it's time.....one never knows when it might be too late. Those early days are a bit of a blur - also it was a <b>LONG</b> time ago!<br />
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What do new mothers know around child-rearing? Not a whole lot! There is no manual; there is no prep course. My mother did not live nearby; my MIL did but was not a huge part of the equation. I know now that MILS of young mothers often feel uncomfortable "interfering" with their son's wives. Nonetheless, it was my MIL who first suspected that Andrea was not hearing properly - although she <b>was</b> speaking - just not articulating well and her language at three was not building as rapidly as expected. My husband had been a delayed talker, so no one had seemed terribly concerned, and my pediatrician poo-pooed the concern. Mothers seem to have a sense about problems in their children - regardless. But my MIL put the bug in my ear (pun intended), and so with little (naive) trepidation, off we went to the audiologist!<br />
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Crushing news! MIL was right! Andrea did indeed have moderate sensorineural bilateral hearing loss. OMG!!! What the heck did THAT mean? I was in shock, confused, frightened, devastated, and ALONE! Any new mother who receives a diagnosis of child disability of any sort MUST feel the same. I was not at all prepared for this, didn't want it, and didn't have a clue what to do! And I am a DO-ER!!!!<br />
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Remember, this was 1971 - no Internet, no easy access to information, no immediate source of help, few resources to pursue. Thanks to the <a href="http://www.willierossschool.org/">Willie Ross School for the Deaf</a> in Longmeadow, MA, I began the journey. (I actually thought the school could not possibly still be in existence, but just Googled and found it!) They were the only source of info, providing written materials, parent advising, in-home speech and language assistance for parents/child, pre-school classes, and a connection to others facing the same challenges. It was newly established, and at the time they focused on strictly oral communication. With their guidance, we determined that Andrea would attend their own integrated pre-school as well as another local program where she was the only hearing-impaired child. <br />
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Whether by personality or disability, however, she was always socially reserved, shy, and adjusted slowly to new situations. She began to make huge strides in communication and social skills, and as a result of these experiences, we decided that she would continue in public school, a decision made early on and one that pre-determined the course of her and her sister's education. They both lived in the hearing world, never signed, and proceeded through public schools and college with few disability resources.<br />
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Since Roberta was already born at the time of Andrea's diagnosis, our focus became split: teaching ourselves how to best prepare Andrea for life and finding out if Roberta shared what was apparently a hereditary trait. But we COULDN'T have TWO with the same disability!<br />
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That will be the focus of my next post. But I recall that at the time of this initial diagnosis, my husband was going to school full-time in Boston for another degree, changing careers, and largely unavailable to me and the issues at hand. He had his own struggles with commuting to Boston, attending classes, studying, writing papers, etc. He had little time to provide the comfort, share my distress, learn along with me, and be the support that I really needed. Many marriages would not have survived! I'm proud to say that in September, we will celebrate our 45th anniversary - TOGETHER!!!<br />
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To be continued......Scarf It Uphttp://www.blogger.com/profile/14714633465442678992noreply@blogger.com0tag:blogger.com,1999:blog-1858059858479496446.post-34865970631764387032011-07-22T12:41:00.000-07:002011-07-22T12:41:42.372-07:00Comments may now be easily published!Sorry to those who have tried to post comments on our blog. I needed to adjust the settings - now DONE!!! If you wish to add a comment to any of the previous posts - or this one - feel free to do so. All comments are welcome!<br />
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<i><span class="Apple-style-span" style="font-size: xx-small;">Louise Giordano</span></i>Scarf It Uphttp://www.blogger.com/profile/14714633465442678992noreply@blogger.com1tag:blogger.com,1999:blog-1858059858479496446.post-45740209103084267492011-07-22T04:46:00.000-07:002011-07-22T04:46:05.784-07:00Did you know that the new Mrs. America has RP?<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/AVvXsEhxQDtERuyL2L0aL_poPNkPXvQqzaJRu8HmWMwHZFp8Y9zFqWiTLMW9CrgH8impi_Q1QPsRXU2-4LB40qGD5XBf_ZHNhH2Hb3ybBh5JSfh2PcRErEa2IBmM43vGJ7pm0pvXVaXvALctUzw/s1600/April2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxQDtERuyL2L0aL_poPNkPXvQqzaJRu8HmWMwHZFp8Y9zFqWiTLMW9CrgH8impi_Q1QPsRXU2-4LB40qGD5XBf_ZHNhH2Hb3ybBh5JSfh2PcRErEa2IBmM43vGJ7pm0pvXVaXvALctUzw/s1600/April2.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">April Lufriu - Mrs. America 2011</td></tr>
</tbody></table>This could be the boost we need to get the word out! Mrs. America 2011, April Lufriu from Tampa Bay, FL, has early signs of retinitis pigmentosa (RP), as do two of her children. This article, <a href="http://www.blindness.org/index.php?option=com_content&view=article&id=1653:tampa-bay-chapter-highlights&catid=286:chapter-highlights&Itemid=158">Relishing the Crown</a>, in the Spring 2011 edition of <a href="http://www.blindness.org/index.php?option=com_content&view=article&id=2561:foundation-fighting-blindness-leader-crowned-mrs-america-tampa-bay-chapter-president-april-lufriu-wins-national-pageant-for-married-women&catid=70:press-releases&Itemid=140">In Focus</a> from the <a href="http://www.blindness.org/">Foundation Fighting Blindness</a>, is an interview with April about her win and about her advocacy work for the visually impaired. She is the president of the Foundation Fighting Blindness' Tampa Bay Chapter.<br />
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Retinitis pigmentosa is just one half of the Usher Synrome equation. But it is the vision part - or the loss of vision, actually - that seems to be the far greater disability to manage for Usher patients. My daughters always claim to have a handle on their hearing loss and cope very well in their personal and professional lives. But the vision changes and the challenges that imposes is something else again.<br />
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Any awareness, funding, and research on RP will help with the fight against Usher Syndrome, so I am thrilled with this news of April's winning platform. Congratulations to April and her family! <br />
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<div style="text-align: center;">ON WITH THE FIGHT!!!</div>Scarf It Uphttp://www.blogger.com/profile/14714633465442678992noreply@blogger.com2tag:blogger.com,1999:blog-1858059858479496446.post-91347689790228807722011-07-21T08:48:00.000-07:002011-07-21T08:48:52.871-07:00Memories or Memoirs?It's often been suggested that I write the story of my journey with two children with Usher Syndrome. I suppose I could have started a long time ago, but at the time we learned that Roberta had it - at age 18 - we were all rather in shock and denial. We had spent all those years learning to deal with hearing loss in both girls, and those efforts were obviously successful, but this was a whole new set of challenges for all of us.<br />
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I have a way of handling crisis - very differently from my husband. Through the very many years of our marriage, we have always accused each other of not understanding the other's way. He accuses me of dealing with it all on an emotional level; I believe he only approaches the issues logically and rationally and doesn't consider the emotional/psychological/social aspects. This has caused considerable discord, but we have weathered many crises together. After almost 45 years of marriage, we are still together!<br />
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And together, whether planned or not, we have caused the disability issues in our children, and so it is our duty to help them become the best humans beings that they can be. I believe we have succeeded!<br />
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So....in 1989, Roberta was diagnosed with Usher Syndrome, Type 2. At that time, there was little known and little research into its causes, nor had any genes yet been identified. She was a Freshman in college at a prestigious MA university, had always been an excellent student, and wanted absolutely NOTHING to do with this "thing!" Who could blame her? She was in her prime, away from home, and independent for the first time in her life, and she was thriving! It was a blow to all of us.<br />
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The doctor/researcher at MASS Eye & Ear Infirmary was less than kind and helpful. He WAS, however, interesting in getting her into one of his research studies (which I erroneously called a "project," for which he reamed me out), and considering my horror over the diagnosis as well as his admonishment, I might have preferred a little sympathy and education. I recovered from him and from the news, but I must confess that it was not a happy time in my life. I went through my new grieving process - virtually alone - with little support from family, friends, service providers, medical personnel. And once again, I gained traction on my own emotions by trying to learn as much as I could as quickly as I could.<br />
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The same doctor insisted that our other daughter, also hearing impaired, MUST have this same syndrome. She was not having any of that! She lived hundreds of miles away. And she actually manifested no symptoms until fairly recently. But now her progression seems to be more precipitous. To this day, she has not confirmedly been diagnosed with Usher, due to the fact that she is living in NC where there seem to be no ophthalmologists who specialize in Retinitis Pigmentosa. Anyone reading this who knows of a retinal specialist familiar with this condition, please leave a comment on this blog.<br />
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OK....that's enough for today. If you are inclined to comment here or on FB, I'd be happy to know if you'd like more info about the early years with two hearing impaired youngsters. As my daughters are now grown (I'm a grandmother of THREE beautiful boys and girl who are not afflicted but carry the recessive trait), I am more focused on the present. But I do feel I have much to share with young parents who may be recently dealing with a new and painful diagnosis of hearing loss or deafness or other child disability. I welcome all comments.Scarf It Uphttp://www.blogger.com/profile/14714633465442678992noreply@blogger.com1tag:blogger.com,1999:blog-1858059858479496446.post-18945603761692140372011-07-20T14:44:00.000-07:002011-08-09T13:17:58.993-07:00It's been a very long time......Dealing with child disability!<div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">Not only has it been a very long time, but it's been a very emotional time period. Where to begin? Maybe at the beginning of my journey as a parent.</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><br />
</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">I am the mother of two very special daughters - special in so many ways! And they are exceptional human beings! My journey as mother has been fraught with many ups and downs. It's been an enlightening learning experience since 1971, when our older daughter (Andrea) was diagnosed as hearing-impaired at age 3. Imagine 1971! There was no Internet, no information, no ready source of resources to help us even begin to deal with child disability. What do new parents know? Virtually nothing, for there is no prep course for parenthood.</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><br />
</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">Our second daughter (Roberta) was born that same year, 4 months before Andrea's diagnosis. Immediate hearing testing was inconclusive; it wasn't until she was 13 months old that her hearing-impairment was deemed conclusive. We were now the parents of two hearing-impaired children, four hearing aids, and little else. We knew no one who shared this experience. It was frightening, isolating, depressing. With the help of some wonderful friends and a few good professionals, I began to relate the experience to Kubler-Ross' <u>On Death and Dying</u>, viewing the process as one of grieving.</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><br />
</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><br />
</div><div style="-webkit-border-horizontal-spacing: 10px; -webkit-border-vertical-spacing: 10px;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><strong><big>T</big></strong>he stages Kubler-Ross identified are:</div></div><ul style="-webkit-border-horizontal-spacing: 10px; -webkit-border-vertical-spacing: 10px;"><li><strong><big>D</big></strong>enial (this isn't <em>happening</em> to me!)</li>
<li><strong><big>A</big></strong>nger (why is this happening to <em>me</em>?)</li>
<li><strong><big>B</big></strong>argaining (I promise I'll be a better person <em>if</em>...)</li>
<li><strong><big>D</big></strong>epression (I don't <em>care</em> anymore)</li>
<li><strong><big>A</big></strong>cceptance (<em>I'm ready</em> for whatever comes)</li>
</ul><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><br />
</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 10px; -webkit-border-vertical-spacing: 10px;">It wasn't until I felt relatively more educated on the subject of hearing loss - which was no mean feat without today's Internet - that I understood the loss (grief). In addition to the stages identified above, I grieved for the loss of expectations. New parents have high, and sometimes unrealistic, expectations for their children. I agonized: </span></div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><br />
</div><ul><li><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 10px; -webkit-border-vertical-spacing: 10px;">will they talk? </span></li>
<li><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 10px; -webkit-border-vertical-spacing: 10px;">do they and we need to learn sign language? </span></li>
<li><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 10px; -webkit-border-vertical-spacing: 10px;">will they be reasonably well-educated?</span></li>
<li><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 10px; -webkit-border-vertical-spacing: 10px;">will they be able to support themselves? </span></li>
<li><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 10px; -webkit-border-vertical-spacing: 10px;">will they find happiness in this life? will I ever feel happy again?</span></li>
<li><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 10px; -webkit-border-vertical-spacing: 10px;">how will they cope socially, emotionally, physically?</span></li>
</ul><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 10px; -webkit-border-vertical-spacing: 10px;">There were so many unanswered questions. Life was in turmoil. But I knew I had to do everything in my power to help them succeed in having a normal life. But what was normal anyway? Was it a blessing that they both had the same condition? Or was it just one more twist of fate that one couldn't help the other in hearing, speaking, playing, communicating, socializing? </span></div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 10px; -webkit-border-vertical-spacing: 10px;"><br />
</span></div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 10px; -webkit-border-vertical-spacing: 10px;">Those years are rather a blur. They went to public schools throughout their childhood - with limited special services from a gifted teacher of the deaf. They talked! They were mainstreamed! Mostly they managed in their classrooms with wonderful teachers who learned right along with me and from me. I became an advocate for them and their educational process. In high school, they were pretty much independent of me and of school-provided resources.</span></div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 10px; -webkit-border-vertical-spacing: 10px;"><br />
</span></div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 10px; -webkit-border-vertical-spacing: 10px;">Both went to college; one has an advanced degree and works as a school psychologist, The other works for a medical research company. One is married and has three lovely children; the other is single, dealing with changes on her own.</span></div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 10px; -webkit-border-vertical-spacing: 10px;"><br />
</span></div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 10px; -webkit-border-vertical-spacing: 10px;">In 1990, everything changed again. You'll have to read the next installment to learn what came next!</span></div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 10px; -webkit-border-vertical-spacing: 10px;"><br />
</span></div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 10px; -webkit-border-vertical-spacing: 10px;">To be continued.......!</span></div>Scarf It Uphttp://www.blogger.com/profile/14714633465442678992noreply@blogger.com2