tag:blogger.com,1999:blog-64990047505387899642024-03-24T18:31:55.332-05:00Melissa's DadReflecting on a 22 year journey as the father of a daughter with special needs.Lee Stagnihttp://www.blogger.com/profile/08073644900873940799noreply@blogger.comBlogger23125tag:blogger.com,1999:blog-6499004750538789964.post-24333845912938828452011-05-31T19:49:00.000-05:002011-05-31T19:49:27.540-05:00Lessen the Burden<div class="meta-below-title entry-meta clearfix clearfix-title"> <div class="left"><br />
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<tr><td class="tr-caption" style="text-align: center;">Photo: The Vanderbilt Kennedy Center</td></tr>
</tbody></table>Since discovering Melissa’s medical disability and special needs, it seems that as I think about the future, my mind inevitably wanders to the day when Kathy and I are gone and she is “on her own.” And since she is our only child, I often wonder if things in the future might be different if she had a sibling.<br />
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Having a brother or sister with a disability is not something new. In fact, as long as there have been disabilities, there have been siblings whose family is affected. But this generation is faced with some new challenges.<br />
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In years past, the disabled were often cared for in an institutional setting after their parents or primary caregivers passed on from this life. In these environments, the disabled individual’s needs were fully cared for. But today, many disabled adults are living in semi-independent facilities. This is an excellent structure because the social support system can provide the basic support and the family can supplement that support based on their loved-one’s needs and their own ability to provide for them. But where this approach can break down is upon the passing of the primary caregiver (e.g. parent) which can create a void that needs to be filled.<br />
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This void is apparent to me because without an immediate family member to step in (a brother or sister) we have had to reach out to others who love her; who will likely survive us; and who are willing to embrace the role of overseeing her care within the social services system. Our goal has been to make preparations with the hope that we can lessen the burden on her future caregiver.<br />
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These same preparation techniques can serve parents with multiple children who will likely one day assume some level of responsibility for their disabled brother or sister. Some things that I try to keep in mind …<br />
<ul><li><strong>Respect the Caregiver’s Life</strong>. As a parent, we brought forth our disabled child and have committed our life to them. But not so for the caregiver. We must not forget that their support is a “gift” and we must respect their time and resources.</li>
<li><strong>Promote Independence</strong>. By promoting independence to the greatest extent possible while retaining safety and security, we lessen the future dependency on a caregiver.</li>
<li><strong>Maximize Social Support</strong>. Even when parents have the ability to provide fully for their special-needs child, they should identify and leverage each and every possible support resource available—whether it is income, health-care, or social. Integrating the child into the “system” prevents passing this often difficult task to a future caregiver.</li>
<li><strong>Document Expectations</strong>. While it is not possible to define your wishes for your child in absolute terms, you can certainly create a list of things that you would like to ensure that your child receives when you are gone. This can be very important if the child has issues with self-advocacy or communication and is not able to articulate their needs/wants.</li>
<li><strong>Provide Financially</strong>. Asking someone (another child or third-party) to accept the role of caregiver for your child is one thing … but expecting them to provide financial support is another. Our use of a special needs trust that will provide Melissa with the “extras” in life that she appreciates (and expects) is designed to address this important issue.</li>
</ul>Let us prepare today so that we can <strong>Lessen the Burden</strong> on our special needs child’s caregiver tomorrow.<br />
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PEACELee Stagnihttp://www.blogger.com/profile/08073644900873940799noreply@blogger.com48tag:blogger.com,1999:blog-6499004750538789964.post-39323124110771362792011-05-31T19:46:00.000-05:002011-05-31T19:46:05.668-05:00You Don’t Know That<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisykFWlsx5Upq-FLT1RyDQsHTBPoHhY9sqAfGFP1cLvd1GyrCYQbtArpOISabBjEzqsKRq471dmrQk5Nshxh1x3xy5MBTbq2tkQmxadDvVSUahfMdsmvF-2wmSnA4sbgpxAqMa229e1V0/s1600/QuestionMark-250x250.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisykFWlsx5Upq-FLT1RyDQsHTBPoHhY9sqAfGFP1cLvd1GyrCYQbtArpOISabBjEzqsKRq471dmrQk5Nshxh1x3xy5MBTbq2tkQmxadDvVSUahfMdsmvF-2wmSnA4sbgpxAqMa229e1V0/s200/QuestionMark-250x250.jpg" width="200" /></a></div>The conversation goes something like this … <br />
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Melissa says, “Dad, tomorrow I want to go on a picnic with my friends.”<br />
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I’ve just finished watching the evening news and weather report. They said that it is going to rain all day tomorrow. So my response to her is, “the TV just said that it is going to rain tomorrow”.<br />
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She instantly replies “<span style="text-decoration: underline;">you don’t know that</span>.”<br />
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Over the past couple of years, this has become the de-facto standard response when Melissa doesn’t like what she is told. Truthfully, I’m not sure if she doesn’t hear me clearly; doesn’t understand what I said; doesn’t like the answer she got; or is simply rebelling.<br />
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Regardless of the reason, each time I hear that response it makes me think about how I can best prepare her to make her own decisions. I know they won’t be major decisions—because she will always require some degree of supervision.<br />
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But I feel the need to impart my “wisdom” to her. I want to help her learn from my mistakes so she won’t have to make them herself. Through my life experiences, I really DO know that.<br />
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Through my trial-and-error attempts to address this challenge, I have discovered that Melissa can best “relate” to these decision-making situations if she has previously experienced them herself.<br />
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So in this case I say, “Melissa, do you remember the last time it was supposed to rain and you went bike riding anyway?” She sheepishly replies yes. Then I ask her to recall what happened.<br />
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“I got wet” she said.<br />
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Then I offer, “So don’t you think you might get wet again if you go on a picnic when it is supposed to rain?”<br />
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This is usually followed by stark silence. I know she is thinking about it. I don’t rush it. I let her be the next to speak.Sometimes there is no response at all … but I later discover that she has cancelled her picnic plans. Other times she will push-back again. “It might not” she would say.<br />
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And of course she is right. It might not rain. How many times does your weather forecast actually come true? And if she cancels and it doesn’t rain … then who looks like the fool?<br />
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What I’ve learned through this whole interaction is that she actually is right … <span style="text-decoration: underline;">I don’t KNOW that</span>.<br />
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Now each time we have such a discussion and she utters those words to me, I can only chuckle and think to myself—do I or don’t I know that?<br />
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<span style="text-decoration: underline;">How do you help your child in their decision-making challenges? </span><br />
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PEACELee Stagnihttp://www.blogger.com/profile/08073644900873940799noreply@blogger.com3tag:blogger.com,1999:blog-6499004750538789964.post-79364006885638698192011-05-31T19:40:00.000-05:002011-05-31T19:40:48.565-05:00Starry Night Prom<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRDorsRdrxdr_C0nINg8Y3-iImUkVxh29nLE5Y49ZbdbKZ0s0VluaLd3KAKjIKkOir1YUZKclHCwrv9iCwSJJO4gIJ10o-s5-CVGJfnA6Qe9eI8L9cJWLEmLjyl8GaE8_SXGj3e3qw9sw/s1600/A-journey-under-a-starry-night-250x165.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="131" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRDorsRdrxdr_C0nINg8Y3-iImUkVxh29nLE5Y49ZbdbKZ0s0VluaLd3KAKjIKkOir1YUZKclHCwrv9iCwSJJO4gIJ10o-s5-CVGJfnA6Qe9eI8L9cJWLEmLjyl8GaE8_SXGj3e3qw9sw/s200/A-journey-under-a-starry-night-250x165.jpg" width="200" /></a></div>Over a decade ago, the Lasallian Ministry at DeLaSalle High School in Minneapolis had a wonderful idea. The students and staff would come together and “host” a gala evening of music, dancing, food, and fun for people living with disabilities.<br />
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The event is modeled after a high school “prom” but unlike the traditional formal dance where people with special needs often feel uncomfortable and out-of-place … this prom has been created just for them! And for the guests, it’s free!<br />
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To say that the Starry Night Prom has become popular is an understatement. In 2010, the school hosted over 600 guests. Rumor has it that the event, held last weekend, pushed attendance to nearly 1,000. Let me tell you a little more about the event.<br />
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<strong>The Hosts.</strong> Half of the DeLaSalle student body (about 200 students) work for months planning and preparing for this special evening. They raise money, make decorations and plan the refreshments. Most importantly, they attend seminars and sensitivity training so they are comfortable and able to appropriately interact with their guests. When the day arrives, their hard work transforms the school gymnasium into a fantasy land. In the early years, music was provided by a D.J. but now they have a live band.<br />
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<strong>The Guests</strong>. The event is open to people of all ages living with a disability. And while there are a few teens and young adults, the event brings out the older community as well. Some live with their parents and others in group homes. They arrive by car, bus, and even in limos! Some dress to the nines; others a little more casual. But one thing they all have in common is that they are there to have fun!<br />
<a href="http://www.5minutesforspecialneeds.com/9460/starry-night-prom/221147_1998136441293_1479964883_32269233_6008649_o/" rel="attachment wp-att-9461" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img alt="" class="alignright size-medium wp-image-9461" height="200" src="http://www.5minutesforspecialneeds.com/wp-content/uploads/2011/05/221147_1998136441293_1479964883_32269233_6008649_o-187x250.jpg" title="Prom" width="149" /></a><br />
This year marks the ninth time Melissa has attended the event. She marks the date on her calendar and she and Kathy make “mom and daughter” plans. It starts with the “dress hunt” and ends with a day of beauty … hairs, nails, general pampering. Then the time arrives.<br />
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<strong>The Evening</strong>. I’m not sure how other families do it, but for the past few years our family and some of Melissa’s friends have a pre-event party and a limo ride to the event. One family hosts the get-together where they snack and chat. Then the limo arrives. The party goers head to the curb and toast with their sparkling (non-alcoholic) beverages. Did I mention the pictures? Every family is snapping their camera to capture the moment. Ever anxious to escape (from their picture-crazy parents) they pile into the limo, crank up the music, and their long, sleek chariot that whisks them away for their evening of fun.<br />
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After a short cruise around the city, they arrive at the school. They pour out of the limo and enter the school where they are warmly greeted by their host students. More pictures and then its off to join the Grand March. No date? No problem. Guests who come alone “march” with a host high school student (host girls will escort guest boys, and vice-versa). Should I mention how excited the guests are to be escorted?<br />
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Once in the gym the party starts. Friends gather at tables (that their parents have ‘reserved’ for them as much as an hour before their arrival. The music starts. Food and drink are consumed. And everyone has a wonderful time.<br />
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Our group of friends then head over to have a late dinner–the parents in one area and the young adults in the other. The laughing and joking continues. Exhausted, our family heads home … where Melissa marks the calendar for next year’s event.<br />
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PEACELee Stagnihttp://www.blogger.com/profile/08073644900873940799noreply@blogger.com2tag:blogger.com,1999:blog-6499004750538789964.post-18475058174894323692011-05-31T19:35:00.000-05:002011-05-31T19:35:10.767-05:00Why Me?<h2><strong><span style="color: red;">“</span><em><span style="color: red;">What doesn’t kill you makes you stronger</span></em><span style="color: red;">” </span></strong></h2><a href="http://www.5minutesforspecialneeds.com/9358/why-me/220px-nietzsche187a/" rel="attachment wp-att-9359" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img alt="" class="alignright size-thumbnail wp-image-9359" height="150" src="http://www.5minutesforspecialneeds.com/wp-content/uploads/2011/05/220px-Nietzsche187a-137x150.jpg" title="220px-Nietzsche187a" width="137" /></a>Friedrich Nietzsche noted German philosopher (1844-1900) offered this bit of wisdom which I have come to embrace as my personal world view … my attitude about my life.<br />
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My perspective is that while “bad things” seem to happen to me, I have the ability to embrace them as an <span style="text-decoration: underline;">opportunity for personal growth</span>. Let me explain.<br />
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Two decades ago when we got the diagnosis that Melissa has a life-threatening metabolic disorder and permanent brain damage, I asked myself many of the questions that we have all pondered. Why have we been given a child with a chronic illness? What have we done to deserve this? <strong>WHY ME</strong>?<br />
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I spent years lamenting our situation. But now I’ve learned that that the birth of our special needs child was not a punishment or an incredibly bad stroke of luck, but rather was a GIFT … an opportunity to make a difference in the world.<br />
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That might sound strange, but here’s how I came to this conclusion.<br />
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As humans, we are only able to see the present and the past. Our world view is therefore shaped by what we have experienced. But as I have grown older (and I would like to think wiser) I’ve come to believe that God has a plan for each of our lives. Since we can’t see into the future, we must have faith that God will guide us and protect us through our life journey … no matter how daunting it might seem on any particular day. And over time, as we experience life, the purpose of this plan will be revealed to us.<br />
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<a href="http://www.5minutesforspecialneeds.com/9358/why-me/oaalogovertical/" rel="attachment wp-att-9360" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img alt="" class="alignright size-thumbnail wp-image-9360" height="88" src="http://www.5minutesforspecialneeds.com/wp-content/uploads/2011/05/OAALogoVertical-150x125.png" title="OAALogoVertical" width="105" /></a><br />
As evidence of God’s plan at work in my life, I offer our experience with the Organic Acidemia Association (<a href="http://www.oaanews.org/">www.oaanews.org</a>). In 1997 my wife Kathy and I assumed responsibility for this fledgling organization that provides information and support for parents and professionals caring for children with metabolic disorders like our Melissa has. Over the past decade, the work of this organization has touched the lives of hundreds. While one might argue that if we had not taken the reins of this support group, someone else may have accomplished the same (or maybe even more). But we’ve come to believe that Melissa was given to us to put us on this path—so that we might help others through their own journey.<br />
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If you are interested in an inspiring book, I recommend <em><span style="text-decoration: underline;">What Doesn’t Kill You Makes you Stronger: Turning Bad Breaks into Blessings</span></em> by Maxine Scnall, published in 2002. In her book, Ms. Scnall offers a glimpse of how people have pulled through a terrible situation or have used creative problem-solving when all hope seemed lost. She recounts her own experience about how she dealt with her daughter’s brain injury from an accident.<br />
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I hope that each of you will consider how the challenges presented to you through your special needs child can be embraced as an opportunity for personal growth.<br />
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PEACELee Stagnihttp://www.blogger.com/profile/08073644900873940799noreply@blogger.com1tag:blogger.com,1999:blog-6499004750538789964.post-33653743685600807022011-04-29T10:22:00.000-05:002011-04-29T10:22:03.116-05:00Journaling as Therapy<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXH416C46uOnGphjYVOi14po0BZo8cYHOBMQpTOZGr6bQskThmvM4_GZGt40yMaRihr8baFEvCdUlk_0V5JwmLVADHf7UxVLPUtKX8EwIqHTm15hyZiOxWqag2LENkms_CwHeFirsqIdE/s1600/journaling.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="148" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXH416C46uOnGphjYVOi14po0BZo8cYHOBMQpTOZGr6bQskThmvM4_GZGt40yMaRihr8baFEvCdUlk_0V5JwmLVADHf7UxVLPUtKX8EwIqHTm15hyZiOxWqag2LENkms_CwHeFirsqIdE/s200/journaling.jpg" width="200" /></a></div><br />
Journaling is the process of writing about one’s life events and feelings.<br />
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It’s a widely recommended self-help tool.<br />
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And it costs nothing except a little time from your busy day. <br />
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There’s something magical that happens when you put pen to paper. A link is established between your hand and your brain. Thoughts that had been trapped deep inside your subconsciousness come spilling forth. And when they are written down, these thoughts, fears, and even great ideas can truly make a difference in the quality of our daily lives.<br />
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Personally, I’ve found that the process of writing in a journal to be highly therapeutic . It amazes me that when I write something down, I am forced to think about what I want to say … and that thought process brings forth many things that I might not have otherwise considered. And because the journal is private (like a diary) I’ve been able to reflect on my deepest feelings and fears.<br />
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A side-benefit of keeping a journal is that you will soon have a transcript of your life. I often look back at my own journals from when Melissa was young and it reminds me of the challenges that we faced—both medically as well as emotionally. I can read about those days long ago when I thought things might never improve … wondering how I would ever survive the challenge. I can also recall my fears for her life and can now see how my own fears caused me to “awfulize” about her medical condition … imagining that it was worse than it really was.<br />
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If you and your spouse are “communication-challenged” then journaling can be a great tool to help you express your inner-most feelings … words that you couldn’t otherwise speak. If you share your journal with your partner, your parents, or your best friend, you’ll be surprised how easy it becomes to talk. Your journal becomes a conversation-starter.<br />
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I don’t think there is a “right” or “wrong” way to journal. The process used will be as unique as the person who does it. It will be challenging at first, but if you stick with it, you’ll soon find your groove.<br />
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Here’s some tips that might help you get started.<br />
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<strong>Forget the Computer – Write in a Book. </strong>This might seem strange advice from a blogger to an audience reading on a computer … but I find that there is something special that happens with the written word. So get a spiral-bond notebook, a pen, write the date at the top of the first stage and you’re on your way.<br />
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<strong>Pick a Time and Place. </strong>We’re all creatures of habit. Find an ideal time when you can devote 15-20 minutes to journaling. It might be while having your morning cup of coffee; or just after you put the kids to bed; or maybe before you go to sleep. Getting into a routine will help you focus and keep going. You might even look forward to that time each day!<br />
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<strong>Keep Reminders</strong>. When you sit down to write, remembering topics to cover will often be a challenge. Just get a little notebook and write down words that will help you remember the situation. That’s what I do for this blog. And that’s how I came up with today’s topic.<br />
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<strong>Don’t Quit if You Miss a Day or Two</strong>. There is no rule that you have to journal every day. If you miss a day, so what? This is for you … so do it as often as you can.<br />
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<strong>Read Your Last Entry Before Writing the Next</strong>. I’ve found that re-reading what I previously wrote helps get me“in the mood” to write. It can also help you reflect on what’s happened since then. Have things improved? Gotten worse? Starting where you left off also helps create a continuum of thought, even if it has been weeks since journal entries.<br />
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<strong>Go Deep—Don’t Hold Back. </strong>The journal is for you, so don’t hold back. Don’t worry about hurting anyone’s feelings. Just let go and tell it like it is.<br />
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Keeping a journal can be an eye-opening experience. It can also become a family heirloom. So pick up a pen and start writing.<br />
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PEACELee Stagnihttp://www.blogger.com/profile/08073644900873940799noreply@blogger.com1tag:blogger.com,1999:blog-6499004750538789964.post-12118189025356866682011-04-29T10:17:00.000-05:002011-04-29T10:17:58.334-05:00Family Game Night<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheox0BykOwjKOJisQhcb7zCq2Mk0YYVP7NgZVknHF6OBKpt86sGukSw9QY50_7Ud7XXbIERRbzV3QwCMhF4dcZ-uYSswzf-VGmDhDvvIsNGrM2FLdoyh8L_xYboMv6gHuw-PdQAnUco2I/s1600/board_games.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheox0BykOwjKOJisQhcb7zCq2Mk0YYVP7NgZVknHF6OBKpt86sGukSw9QY50_7Ud7XXbIERRbzV3QwCMhF4dcZ-uYSswzf-VGmDhDvvIsNGrM2FLdoyh8L_xYboMv6gHuw-PdQAnUco2I/s200/board_games.jpg" width="200" /></a></div><br />
My wife Kathy and I have played games with Melissa for nearly 20 years. We started by assigning a specific night of the week when we would clear the calendar and devote an hour or two to playing games. Sometimes we played board games. Other times we played more physical games.It wasn’t long before Melissa came to cherish this family time. She could be the center of attention and have fun. If we tried to skip a night, she would let us know that she wasn’t happy about it.<br />
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I’ve come to realize that not only were these games entertaining, but they helped Melissa grow and learn in some very important areas.<br />
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<strong>SOCIAL SKILLS</strong>. Appropriate social behavior is a challenging concept for any child, and seems to be even more difficult for our kids. You can’t rationalize with them. And you can’t be present for every “teachable moment” when you can use their actions to help guide them about what is correct and incorrect behavior. I’ve noticed that game-playing has instilled strong positive social skills in Melissa. Through game-playing, she’s grasped the concepts of turn-taking and following rules—both vital skills for appropriate social behavior.<br />
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<strong>STRATEGY DEVELOPMENT</strong>. Effective game-playing often calls for use of a game strategy. For example, in the game of SORRY, the player sometimes must decide which competitor game piece to send back <em>start</em> … and of course the optimum selection would be the game piece closest to <em>home</em>. While we take this process for granted, it is complex decision-making. After selecting the wrong piece (and losing) Melissa quickly figured out the strategy which she now uses very effectively!<br />
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<strong>RANDOMNESS and CHANCE</strong>. The concept that some things are out of our control is nearly impossible to teach without an example. Game-playing demonstrates this each time you roll of the dice, select a playing card, or spin the spinner. Your child sees that they can’t control the outcome … and must deal with the results.<br />
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<strong>MOTOR SKILLS</strong>. Melissa has issues with both fine and gross motor skills as a result of her medical issues. Moving board game pieces, shuffling cards, and similar actions are a great way to exercise fine motor skill development. Physical games such as shuffleboard, bowling, darts, croquet, and bocce ball can help improve coordination and gross motor skill development.<br />
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<strong>EMOTIONS</strong>. Nobody likes to lose—it’s a disappointment. And we know that life is filled with disappointments. Temper-tantrums are a common reaction to disappointment. Game-playing can help address this issue by demonstrating the appropriate way to handle the disappointment (of losing). By setting a good example of being a “good sport” we offer positive reinforcement and teach appropriate techniques for controlling one’s emotions.<br />
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<strong>And what about the computer? </strong>Melissa has used the computer since she was three years old. At that time, we purchased software for our MAC that used game-playing to reinforce her counting and spelling skills. It worked remarkably well. When the computer is used in this mode, it is a “personal” device and isn’t a substitute for Family Game Night. However, new gaming technology, such as the Wii has expanded computer-based games to include other players … which are better suited to the skill development a parent might seek from game-playing.<br />
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Game-playing is an educational experience. It helps develop a competitive nature and desire for winning. And it helps deal with the disappointment of losing. If you aren’t playing games together, I urge you to consider making it a new family ritual.<br />
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PEACELee Stagnihttp://www.blogger.com/profile/08073644900873940799noreply@blogger.com0tag:blogger.com,1999:blog-6499004750538789964.post-33433986014042662282011-04-29T10:14:00.000-05:002011-04-29T10:14:26.058-05:00Circle of Friends<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizdObL2KcawHeBN0G4gASo-Ch6dWhh2ubEX6NB4vQUrbRx1r6RZIa8SnFlnRSOtLuPe4hEOMfB0oYiA_bkT_-1qGyMti5vFqooXXqDuLSior7WhNTxzaKd-3ItsMJe6nUAzJ4OpPE0rfM/s1600/CircleofFriends.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="195" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizdObL2KcawHeBN0G4gASo-Ch6dWhh2ubEX6NB4vQUrbRx1r6RZIa8SnFlnRSOtLuPe4hEOMfB0oYiA_bkT_-1qGyMti5vFqooXXqDuLSior7WhNTxzaKd-3ItsMJe6nUAzJ4OpPE0rfM/s200/CircleofFriends.jpg" width="200" /></a></div>Each person develops a circle of friends throughout their lifetime. Friendships are formed through our personal interactions. These may stem from our childhood, our neighborhood, our workplace, our church or from a variety of other sources. We select our friends based on our common value-system, interests and world view. Over time, friends are added and removed from our circle. It is a natural occurrence that we mostly take for granted.<br />
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As a parent of a special needs child, we develop a unique circle of friends. Many of our friends are parents of other special-needs children that may be our child’s friend or participate with our child in any number of activities. You might also create a circle of friends surrounding your advocacy for a cause that you care deeply about.<br />
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For the past two decades, my wife Kathy and I have developed a number of these circles. Today I would like to address just one … the <em><strong>Special Needs Parent Circle.</strong></em><br />
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Many children with special needs are challenged with social and interpersonal relationships. They have difficulty establishing close and meaningful friendships and often struggle to maintain them. We’ve learned that most of these kids develop friendships through school, sports, or other special activities. And in many cases, the parents of the kids meet one another as they attend these events.<br />
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<span style="text-decoration: underline;"><em>Sometimes that meeting results in a closer friendship among the parents</em>.</span> I’ve found that when you befriend the parent(s) of your child’s friend, a special bond is created. This is probably because you are walking a similar life path. And that commonality lets you share information and anxieties. Unlike your relationships in other circle of friends, these people can relate! And together you can represent a formidable unified voice when school or other issues don’t meet your kid’s needs or your expectations. And you can even share caregiving, providing the other family with much-needed respite. And we’ve found that when the families bond, the underlying friendship of the kids grows ever-stronger.<br />
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<span style="text-decoration: underline;"><em>Sometimes that meeting results in nothing between the parents</em></span><strong><em>. </em></strong><em><strong> </strong></em>There are many reasons why this happens. You may have a dissimilar world view. You may find that these adults don’t share your value system or morals. You may not respect their decision-making or even their parenting style. But whatever the reason, you don’t form a bond. We’ve discovered that when this happens, the underlying friendship of your child and their friend may suffer. It seems clear to me that establishing a circle of friends that includes other special-needs parents adds real value for your child and their social skills development. But there can be a dark side as well.<br />
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<span style="text-decoration: underline;"><em>What if you end a relationship with their friend’s parents?</em></span> The most challenging element facing special-needs parents who are friends comes if/when that friendship comes to an end. Does it also spell the end of the children’s friendship? I’ve found the answer lies in the manner in which the parents end their friendship. If the friendship ends because the individuals drift apart (new/different interests, moving from the neighborhood, etc) then the kid’s friendship can continue. But if the parents friendship breaks down because of a disagreement, then maintaining the kid’s relationship becomes nearly impossible. And that’s a shame because it isn’t the child’s fault, yet they can lose a good friend in the process! This has happened to us. And while we feel bad about it, it was unavoidable.<br />
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Have you developed a circle of friends that includes other special-needs parents? Have you found that these relationships are of value? Have you lost any of those friends? If that happened, what was the impact on the kids?<br />
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My hope is that this insight somehow helps you be a better parent and helps you empower your children to build and nurture their own circle of friends.<br />
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PEACELee Stagnihttp://www.blogger.com/profile/08073644900873940799noreply@blogger.com0tag:blogger.com,1999:blog-6499004750538789964.post-70726807182073214452011-04-29T10:10:00.000-05:002011-04-29T10:10:25.078-05:00The Cab Ride<em>Today I offer something a little different — a story that I read a few years ago that makes me search for those special opportunities where I might do something that improves the life of just one person.</em> <br />
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<strong>The Cab Ride </strong>(Author Unknown)<br />
<a href="http://www.5minutesforspecialneeds.com/9227/cab-ride/taxi-sign/" rel="attachment wp-att-9228" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img alt="" class="alignright size-medium wp-image-9228" height="166" src="http://www.5minutesforspecialneeds.com/wp-content/uploads/2011/04/taxi-sign-250x166.jpg" title="taxi-sign" width="250" /></a><br />
Twenty years ago I drove a cab for a living. When I arrived at 2:30am, the building was dark except for a single light in a ground floor window. Under these circumstances, many drivers would just honk once or twice, wait a minute and then drive away. But I had seen too many impoverished people who depended on taxis as their only means of transportation. Unless a situation smelled of danger, I always went to the door. This passenger might be someone who needs my help, I reasoned to myself.<br />
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So I walked to the door and knocked. “Just a minute” answered a frail, elderly voice.<br />
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I could hear something being dragged across the floor. After a long pause, the door opened. A small woman in her 80s stood before me. She was wearing a print dress and a pill-box hat with a veil pinned on it, like somebody out of a 1940s movie. By her side was a small nylon suitcase.<br />
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The apartment looked as if no one had lived in it for years. All the furniture was covered with sheets. There were no clocks on the wall, no knickknacks or utensils on the counters. In the corner was a cardboard box filled with photos and glassware.<br />
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“Would you carry my bag out to the car?” she said.<br />
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I took the suitcase to the cab, then returned to assist the woman. She took my arm and we walked slowly to the curb. She kept thanking me for my kindness.<br />
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“It’s nothing” I told her. “I just try to treat my passengers the way that I would want my own mother to be treated.”<br />
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“Oh, you’re such a good boy,” she replied.<br />
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When we got into the cab, she gave me an address and then asked, “Could you drive through downtown?” I replied that it’s not the shortest way. “Oh, I don’t mind,” she said, “I’m in no hurry. I’m on my way to a hospice.”<br />
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I looked into the rear view mirror. Her eyes were glistening. “I don’t have any family left,” she continued. “The doctor says that I don’t have very long”. I quietly shut off the meter. “What route do you want me to take?” I asked.<br />
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For the next two hours we drove through the city. She showed me the building where she had once worked as an elevator operator. We drove through the neighborhood where she and her husband had lived when they were newlyweds. She had me pull in front of a furniture warehouse that had once been a ballroom where she had gone dancing as a girl. Sometimes she’d ask me to slow in front of a particular building or corner and would sit staring into the darkness—saying nothing.<br />
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As the first hint of sun was creasing the horizon, she suddenly said, “I’m tired. Let’s go now”. We drove in silence to the address she had given me. It was a low building, like a small convalescent home, with a driveway that passed under a portico. Two orderlies came out to the cab as soon as we pulled up. They were solicitous and intent, watching her every move. They must have been expecting her. I opened the trunk and took the small suitcase to the door.<br />
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The woman was already seated in a wheelchair. “How much do I owe you?” she asked, reaching into her purse.<br />
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“Nothing” I replied.<br />
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“You have to make a living,” she answered. “There are other passengers,” I responded.<br />
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Almost without thinking, I bent down and gave her a hug. She held onto me tightly. “You gave an old woman a moment of joy,” she said. “Thank you.” I squeezed her hand and walked into the dim sunlight.<br />
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Behind me I heard a door slam shut. It was the sound of the closing of a life. I didn’t pick up any more passengers that shift. I drove aimlessly lost in thought. For the rest of that day I could hardly talk. What if that woman had gotten an angry driver, or one who was impatiently waiting to end his shift? What if I had refused to take the run or had honked once and drove away?<br />
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After thinking about it, I’ve come to the conclusion that I have never done anything more important in my entire life than what i did tonight.<br />
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Our lives revolve around great moments. But great moments often catch us unaware. May our busy lives never get in the way of a truly “great moment” in the giving of ourselves to others.<br />
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PEACELee Stagnihttp://www.blogger.com/profile/08073644900873940799noreply@blogger.com0tag:blogger.com,1999:blog-6499004750538789964.post-30601241818569896452011-03-11T16:13:00.000-06:002011-03-11T16:13:37.041-06:00Traveling with a Special Needs Child<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgytQPy6xgl7X1bnRnbJRcEIf5A3MVhDSQEIUeNB6LsIK5g-pzvKfcX-N16t9BPMMWeYS12Mcyqm18ewk1ZaQtgqd7g1usywQdvcfcJPBxN9wy3wCt6VqsbtUg8RWw875MLr0Ou-rbDmhg/s1600/special-needs3.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="172" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgytQPy6xgl7X1bnRnbJRcEIf5A3MVhDSQEIUeNB6LsIK5g-pzvKfcX-N16t9BPMMWeYS12Mcyqm18ewk1ZaQtgqd7g1usywQdvcfcJPBxN9wy3wCt6VqsbtUg8RWw875MLr0Ou-rbDmhg/s200/special-needs3.jpg" width="200" /></a></div>We first traveled with our daughter Melissa when she was an infant. That was 22 years ago when flying was a snap. But over time her needs became more complex. And traveling also became complicated. We found that advance planning was necessary to ensure an enjoyable trip. Some of the things we have done include:<br />
<br />
<strong> </strong> <br />
<strong>Identify local medical providers in the area where you are traveling</strong>. If possible, we tried to find a local metabolic specialist (who would be able to treat Melissa if she were to have a metabolic crisis during our trip) and jot down their contact information.<br />
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<strong>Pack extra medical supplies to carry on the plane</strong>. It can be impossible finding a replacement feeding tube or 60cc syringe in a small country town on a Sunday. So we always brought extra. But as we all know, carry-on luggage now comes under great scrutiny. When we pass through the security checkpoint we are routinely pulled aside where they open our bag and we have to explain to the agent why we are carrying bags of “white powder” (Melissa’s special metabolic formula) and syringes (for her bolus tube feedings). We also carry liquid medications—often in excess of the maximum allowed for carry-on luggage.<br />
<a href="http://www.5minutesforspecialneeds.com/7277/traveling-special-needs-child/tsa/" rel="attachment wp-att-7279" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><a href="http://www.5minutesforspecialneeds.com/7277/traveling-special-needs-child/tsa/" rel="attachment wp-att-7279" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img alt="" class="alignright size-thumbnail wp-image-7279" height="150" src="http://www.5minutesforspecialneeds.com/wp-content/uploads/2011/01/tsa-150x150.jpg" title="tsa" width="150" /></a><br />
While we have never been refused passage, I imagine that someday it might happen. So I recently visited the TSA web site (<a href="http://www.tsa.gov/">www.tsa.gov</a>) which has a section that addresses <strong>Travelers with Disabilities and Medical Conditions. </strong>In part it reads:<br />
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<strong><em>Medications. </em></strong><em>You may bring all prescription and over-the-counter medications (liquids, gels, and aerosols) including petroleum jelly, eye drops, and saline solution for medical purposes. Additional items you may bring include:</em><br />
<em> </em><br />
<ul><li><em>Liquids including water, juice, or liquid nutrition or gels for passengers with a disability or medical condition;</em></li>
<li><em>Life-support and life-sustaining liquids such as bone marrow, blood products, and transplant organs;</em></li>
<li><em>Items used to augment the body for medical or cosmetic reasons such as mastectomy products, prosthetic breasts, bras or shells containing gels, saline solution, or other liquids; and,</em></li>
<li><em>Gels or frozen liquids needed to cool disability or medically related items used by persons with disabilities or medical conditions.</em></li>
</ul><em> </em><br />
<em>You are not limited in the amount or volume of these items you may bring in your carry-on baggage. BUT if the medically necessary items exceed 3 ounces or are not contained in a one-quart, zip-top plastic bag, you MUST declare to one of our Security Officers at the checkpoint for further inspection.</em><br />
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I have printed out this page and plan to have it handy in the event that we encounter a TSA agent who is not totally knowledgeable in this area.<br />
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Another aspect that we learned about travel is that we become disconnected from the medical team that we have come to value and rely upon. At home they know our child and are available with a phone call. But what happens if you need them and you are thousands of miles away?<br />
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Recognizing that this might be an issue, we asked Melissa’s metabolic specialist to write a “treatment letter”. The letter was intended to provide an ER physician with a general overview of her unique, rare condition as well as a “game plan” for treatment should that become necessary. We always kept the letter with us. Then on one trip, Melissa had a metabolic crisis. We had a great sense of security as we gave the letter to the attending doctor who proceeded to care for her!<br />
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There are many resources on the Internet that offer helpful tips regarding special needs travel. One of the most comprehensive that I found was on the Oley Foundation web site. Founded in 1983 by Dr. Lyn Howard and her patient Clarence “Oley” Oldenburg, the Oley Foundation is a national, independent, non-profit 501(c)(3) organization that provides information and social support to<em> <strong>consumers of home parenteral (IV) and enteral (tube-fed) nutrition</strong></em>, helping them live fuller, richer lives. At their web site <a href="http://www.oley.org/">www.oley.org</a> they offer some excellent travel tips as well as a number of “template” travel letters that you can provide to your medical team so that you have fully documented directives for situations such as hospitalizations and IV/Tube feeding.<br />
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The best advice that I can offer dates back to my Boy Scout training—BE PREPARED.<br />
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PEACELee Stagnihttp://www.blogger.com/profile/08073644900873940799noreply@blogger.com2tag:blogger.com,1999:blog-6499004750538789964.post-73532398447657170572011-03-11T16:07:00.000-06:002011-03-11T16:07:18.001-06:00Open W - I - D - E<a href="http://www.5minutesforspecialneeds.com/6809/open-wide/dentist/" rel="attachment wp-att-6810" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img alt="" class="alignright size-medium wp-image-6810" height="168" src="http://www.5minutesforspecialneeds.com/wp-content/uploads/2010/12/Dentist-250x210.jpg" title="Dentist" width="200" /></a><strong>Does an Apple a Day Keeps the</strong> <strong><span style="text-decoration: underline;">Dentist Away</span></strong>?<br />
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Some say YES, others say NO.<br />
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Apples contain properties that can kill up to 80% of bacteria that form in the mouth. But dentists suggest that apples can be as bad as candy due to the high sugar content.<br />
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For my daughter Melissa, the answer doesn’t matter … because she won’t eat apples.<br />
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Over the past decade there have been significant advances in dentistry for special needs children. Now some dentists focus their practice on Special Needs Dentistry. Just do a Google Search and you will find many of them.<br />
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But this wasn’t the case twenty years ago when my daughter Melissa was growing up. Over the past 20 years we have endured many dental challenges.<br />
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<strong>BRUSHING</strong>. As I have previously written, Melissa has an oral aversion resulting from her Propionic Acidemia metabolic disorder and as has been tube-fed for most of her life. It is well-documented that people who are tube fed develop dental issues.<br />
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The big offender is plaque. We know that plaque is that sticky mix of bacteria that builds on the surface of our teeth. And the bacteria in tooth plaque releases acid that damages tooth enamel, creating holes that we know as cavities.<br />
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But what I didn’t realize is that you don’t have to eat to develop plaque. I always thought that it was the food that we eat that creates the plaque. But I have discovered that plaque buildup can be worse for those who don’t eat because chewing our food, in part, helps to dislodge some of the plaque before it hardens into tartar.<br />
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As every dentist or hygienist will tell you, brushing and flossing is the way to rid your mouth of plaque. But what happens if you can’t stand to put a toothbrush in your mouth? Or when the taste and texture of toothpaste makes you gag? The answer of course is that you FIGHT. This was the situation with Melissa. Since she was a child, we had to fight daily to get her to brush her teeth. And that fight continues to this very day!<br />
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<strong>SWOLLEN GUMS</strong>. Tooth eruption (breaking through the gums) can be delayed in young children with growth disturbances. When she was little, you could barely see Melissa’s baby teeth in part because gums were swollen—a common side effect from phenobarbital. We gave her phenobarb for a couple of years, following a series of seizures she had during a hospital stay when she was about two. And even when we stopped the medicine, the gums remained enlarged. As her permanent teeth were ready to appear, her baby teeth were still stuck in her gums. To correct the problem she had out-patient surgery where they extracted the baby teeth allowing her permanent teeth to come in.<br />
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<a href="http://www.5minutesforspecialneeds.com/6809/open-wide/how-to-maintain-your-teeth-after-braces/" rel="attachment wp-att-6825" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img alt="" class="alignright size-thumbnail wp-image-6825" height="116" src="http://www.5minutesforspecialneeds.com/wp-content/uploads/2010/12/How-To-Maintain-Your-Teeth-After-Braces-150x116.jpg" title="How-To-Maintain-Your-Teeth-After-Braces" width="150" /></a><strong>CROWDING and MISALIGNMENT. </strong> Many of us have had crooked teeth and braces to correct them. And if you have had braces, you know that keeping them clean is challenging. Now what if you have difficulty brushing because of an oral aversion? Should you forgo braces or struggle to keep them clean? That was the question that we faced with Melissa. In the end, we decided to try braces. She had four teeth removed to make space and then had braces installed. We fought with brushing for a year. During that time the teeth moved and while they are not perfect, they look straight. She now wears a retainer to bed every night. We found that the end result was worth the struggle.<br />
Interestingly, Melissa has done some “modeling”for the company where my wife Kathy works. The company UCare is an HMO and Melissa has been featured in a variety of their marketing materials. Most recently UCare has sponsored a “mobile dental clinic”. They decorated the side of the bus with a variety of pictures … including Melissa’s. If you look closely you can see that her gums are slightly red and inflamed which is her “normal”dental state. We find it so ironic that her picture would be used for anything “dental” related!<br />
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<div class="wp-caption aligncenter" id="attachment_6826" style="width: 560px;"><a href="http://www.5minutesforspecialneeds.com/6809/open-wide/ucare-bus/" rel="attachment wp-att-6826"><img alt="" class="size-large wp-image-6826" height="309" src="http://www.5minutesforspecialneeds.com/wp-content/uploads/2010/12/ucare-bus-550x309.jpg" title="ucare bus" width="550" /></a><div class="wp-caption-text">My daughter Melissa is pictured third from the left</div></div><br />
Our dental challenges continue. We have just scheduled our next dental adventure … removal of her wisdom teeth. We are confident that she will do fine and are keeping our fingers crossed that she does not develop any complications.<br />
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Some of the things that we found helpful during our dental journey include:<br />
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<strong>Make Visits Routine.</strong> Melissa goes for a cleaning every six weeks. While this is costly, it is now a routine and she no longer fights these visits. It also helps to keep her mouth in better condition due to her less-than-effective daily brushing.<br />
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<strong>Offer Distractions.</strong> The noise and smell of the dentist office makes many people apprehensive from the moment they walk through the door. We have asked our dentist to use a clear shield (not a mask) because Melissa is frightened by masks. And she brings her own music player with her so she can control the sounds she hears.<br />
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<strong>Physical Restraints. </strong> In the past it was not uncommon for dentists to suggest using physical restraints for children who would fight during procedures. I’m not aware of the current practices but after several very challenging visits, we reluctantly agreed to the use of a “papoose board” as a way of restraining Melissa during dental procedures. While it was successful in holding her still … but it was also unsuccessful because it made her even more frightened to go for the next visit. In retrospect, I think it was a mistake.<br />
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I hope that some of our experiences might help you with your parenting dental challenges.<br />
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PEACELee Stagnihttp://www.blogger.com/profile/08073644900873940799noreply@blogger.com0tag:blogger.com,1999:blog-6499004750538789964.post-61017999573506863512011-03-11T16:01:00.000-06:002011-03-11T16:01:59.030-06:00The Nail That Sticks Out is Hammered Down<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7uNPa3vJVVDz6efpbJdfnO5sZJba1-gVYs3wB_w03IdOCUwhOKyPpiR69oLMKnnPYTtE_wvpSaA4uZ3veWfcK0PJMSrHLsjZC9IVKMzbu1EQtBGQBd-IokaaehLru38NkA0iJwwmajrM/s1600/hammer-and-nail.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7uNPa3vJVVDz6efpbJdfnO5sZJba1-gVYs3wB_w03IdOCUwhOKyPpiR69oLMKnnPYTtE_wvpSaA4uZ3veWfcK0PJMSrHLsjZC9IVKMzbu1EQtBGQBd-IokaaehLru38NkA0iJwwmajrM/s200/hammer-and-nail.jpg" width="142" /></a>As a special needs parent, <span style="text-decoration: underline;">advocacy</span> is my top priority.<br />
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By definition, advocacy means interceding on behalf of another. When we advocate, we often find ourselves at odds with “the system”. And when we take on the system for the benefit of our child, we stand among the minority.<br />
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“<strong>The nail that sticks out is hammered down</strong>”. This Japanese proverb warns that standing out will bring the wrath of a system that wants to <em>hammer us down</em>, making us vanish like a nail driven deep into wood.<br />
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Unfortunately, challenging the system is sometimes the only way to obtain the best for our child. You might ask, why is this necessary?<br />
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I’ve come to the conclusion that advocacy is necessary because of the <strong>design</strong> <strong>of the system</strong>. While our society’s social systems profess to consider the needs of the individual, by necessity they are designed to serve the masses. They seek a common denominator from which they deliver standardized services. Our problem is that our children don’t fit this profile … thus our need to fight.<br />
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The challenge of advocating for a special needs child never ends. My wife and I have spent two decades enduring this fight—and we see no end in sight.<br />
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Over the years, we have been our daughter’s advocate as we challenged the education system (demanding an appropriate and challenging IEP); the health care system (demanding appropriate medical testing, diagnosis and treatment); and government agencies (demanding appropriate social support services).<br />
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We have spoken to government legislators on her behalf as they considered eliminating programs that support and empower her and others with special needs.<br />
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And we have joined with her physician to advocate for coverage when health insurance has denied her claims.<br />
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Our advocacy has also included supporting initiatives such as expanded Newborn Screening, which tests babies for over 60 inherited genetic disorders. We are passionate about this cause because we know that in many cases, early detection can mean the difference between life and death.<br />
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Being an effective advocate requires preparation and practice. Here are some tips:<br />
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<strong>Educate Yourself.</strong> Learn all you can about your child’s medical condition and the current state-of-the-art in treatments. Discover the appropriate social services available to your child and how to obtain them. Connect with other parents who have already traveled down this bumpy road so that you can avoid the potholes that they encountered.<br />
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<strong>Know Your Rights.</strong> I found that becoming a “pseudo-lawyer” has made me a more effective advocate. I learned about special education law. I learned about government rules of qualification for social services. And I’ve learned about wills and special needs trusts to make sure that my daughter is taken care of when I am gone.<br />
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<strong>Take Action.</strong> Procrastination is the enemy of an effective advocate. You might blame the delay on the lack of time. But more often it is the result of denial or fear. I have found that by simply taking one step at a time, you can overcome procrastination.<br />
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Rocking the boat is never fun or easy.<br />
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The system will work against you. It will demand that you complete endless forms, evaluations, more forms, justifications, reviews, approvals and yes, more forms. Answers will be delayed until you force the issue.<br />
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Keep in mind that you are asking those managing the system to approve something special, to spend more money, or make concessions that may require a detailed study or higher level approval. These things take time. Often the system counts on you giving up. But for those who are persistent, the rewards are great. Your child gets the support they deserve.<br />
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For an advocate, that Japanese proverb SHOULD SAY …<br />
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<a href="http://www.5minutesforspecialneeds.com/6621/nail-hammered-down/hang-my-hat/" rel="attachment wp-att-6639"><img alt="" class="alignright size-medium wp-image-6639" height="116" src="http://www.5minutesforspecialneeds.com/wp-content/uploads/2010/12/hang-my-hat-250x166.jpg" title="hang my hat" width="175" /></a><br />
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“<strong>The nail that sticks out <span style="text-decoration: underline;">is where I hang my hat</span></strong>”<br />
Stand strong for your child.<br />
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PEACELee Stagnihttp://www.blogger.com/profile/08073644900873940799noreply@blogger.com0tag:blogger.com,1999:blog-6499004750538789964.post-75020153303789637172011-03-11T15:55:00.000-06:002011-03-11T15:55:16.841-06:00Lean on Me - A Caregiver's Anthem<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjChbW-GTEombCgAOUel00hLKDxuAfbrNAMjhTZ3qLrGfwwEc6Kawdi0LDxOmmQmP2QW7TA7xtHBFBDo9gGPNTs4fgW_7Epqjk298RLwWKQDnN7H2YbIt9c_c2rG615YX2ilMND3xn4G0w/s1600/seeburgc_jukebox_11.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjChbW-GTEombCgAOUel00hLKDxuAfbrNAMjhTZ3qLrGfwwEc6Kawdi0LDxOmmQmP2QW7TA7xtHBFBDo9gGPNTs4fgW_7Epqjk298RLwWKQDnN7H2YbIt9c_c2rG615YX2ilMND3xn4G0w/s200/seeburgc_jukebox_11.jpg" width="141" /></a></div>Music has become the soundtrack of my life. When I hear a song, it brings back memories of where I was or what I was doing when I first heard the tune. This happens because of the brain’s “memory wiring” system. That wiring links your memory of the song together with your memories of the events or feelings that were happening at the time the song memory was stored. When you hear the song, that memory and the memories wired to it are activated. The human body is so amazing!<br />
<br />
<strong><a href="http://www.youtube.com/watch?v=HaVXfHZv50Y" target="_blank" title="Lean on Me">Lean on Me</a> </strong>was Bill Wither’s only number one hit 32 years ago. The timeless message keeps it on many radio playlists. And each time I hear it (as I did yesterday) it brings me back to 1972.<br />
<br />
I was in my second year of college. I was having fun—too much fun. In fact, so much fun that I didn’t bother attending classes! After failing all but one course, I was put on academic probation. My parents were furious. I was confused about where I was headed with my life. The Vietnam War was raging and I was afraid I might get drafted. I felt alone. And then I heard the lyrics of this song and I realized that my fears and sorrow would pass. And for the first time in my life I learned how to reach out to others for help.<br />
<br />
This song encourages us to reach out to others for support. It speaks to people of all races, creeds, ethnic, and socio-economic backgrounds because we all find ourselves in situations where we can’t go it alone.<br />
<br />
Today I nominate <strong>Lean on Me</strong> as the official <span style="text-decoration: underline;">anthem</span> for “caregivers”.<br />
<br />
CAREGIVERS. They offer a hand to those in need. They provide a shoulder to cry on. And they rarely get the thanks that they so deserve. Some may be caring for an aging or affirmed parent. Others, like us, might be caring for a special needs child or adult. Caregivers work is never done. We must balance our own lives with the demands placed on us to care for that special person in our life.<br />
In the end, we can’t do it alone. We need support, but all-to-often resist asking for help. That is where this song’s message speaks to us.<br />
<br />
<strong>Sometimes in our lives we all have pain</strong><br />
<strong>We all have sorrow</strong><br />
<strong>But if we are wise</strong><br />
<strong>We know that there’s always tomorrow</strong><br />
<br />
Withers starts the song by reminding us that we ALL have pain and sorrow, yet we should not forget that tomorrow brings another day. When the demands of caregiving get the best of me and I begin feeling sorry for myself, I need a reminder that I am not the only person with this challenge and that tomorrow is yet another day.<br />
<br />
I am reminded of a speech made by Abraham Lincoln in 1859 where he recalled this fable: <em>An Eastern monarch once charged his wise men to invent him a sentence, to be ever in view, and which should be true and appropriate in all times and situations. They presented him the words: “And this, too, shall pass away.”</em><br />
<br />
<strong>Lean on me, when you’re not strong</strong><br />
<strong>And I’ll be your friend</strong><br />
<strong>I’ll help you carry on</strong><br />
<strong>For it won’t be long</strong><br />
<strong>‘Til I’m gonna need</strong><br />
<strong>Somebody to lean on</strong><br />
<br />
What a powerful message. We are simply humans. We can’t be strong all the time. Eventually we will need help. And that is when we need to reach out to others for support. But Withers realizes this won’t be easy. So he tells us that we should …<br />
<br />
<strong>Please swallow your pride</strong><br />
<strong>If I have things you need to borrow</strong><br />
<strong>For no one can fill those of your needs</strong><br />
<strong>That you don’t let show</strong><br />
<br />
Asking for help has always been difficult for me. I don’t want to appear weak or needy. Yes, it is my pride that stands in the way. But the message here tells me to “swallow” that pride, admit that I need help, and ask for it.<br />
<br />
<strong>If there is a load you have to bear</strong><br />
<strong>That you can’t carry</strong><br />
<strong>I’m right up the road</strong><br />
<strong>I’ll share your load</strong><br />
<strong>If you just call me</strong><br />
<br />
The caregiver’s load is heavy. We are tired, stressed, and overworked. And when you reach your limit and can’t carry the load yourself, help is available from your support network “if you just call me”. A simply message, but something we forget because we are distracted by the weight of the load on our shoulders.<br />
<br />
<strong>So just call on me brother, when you need a hand</strong><br />
<strong>We all need somebody to lean on</strong><br />
<strong>I just might have a problem that you’d understand</strong><br />
<strong>We all need somebody to lean on</strong><br />
<br />
In the end, Withers suggests that others might surprise you because they can relate to your struggles. And he makes it OK for us to ask for help. Because we ALL need somebody to lean on.<br />
My hope is that the next time you feel overwhelmed with the pressures of caring for that special person in your life, you might consider heeding these timeless words and reach out.<br />
<br />
PEACELee Stagnihttp://www.blogger.com/profile/08073644900873940799noreply@blogger.com0tag:blogger.com,1999:blog-6499004750538789964.post-75875338333570169482010-12-16T11:40:00.000-06:002010-12-16T11:40:02.258-06:00Welcome to HollandToday I was reminded about a fabulous essay written in 1987 by Emily Perl Kingsley about having a child with a disability. Her message is clear. You didn't plan to have a special needs child, but that is what you got. And you can either spend the rest of your life being disappointed, or you can spend that time enjoying the gift that you have received. Here is her essay:<br />
<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhR9ca4bOIwgOaWBWkr7frF19lQMnlZVk-1xwFbqrHHcXREFmnUdvsApAqnI25aMO0STQJZScZ8qTmCkbdG-llD5qQyAZtQmfdb5os0K-M4dlO5uMNNzaqV8c9FPI0rHOFXxZUHZM5jCJg/s1600/Holland+Windmills.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="155" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhR9ca4bOIwgOaWBWkr7frF19lQMnlZVk-1xwFbqrHHcXREFmnUdvsApAqnI25aMO0STQJZScZ8qTmCkbdG-llD5qQyAZtQmfdb5os0K-M4dlO5uMNNzaqV8c9FPI0rHOFXxZUHZM5jCJg/s200/Holland+Windmills.JPG" width="200" /></a></div>When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “<b>Welcome to Holland</b>!”<br />
<br />
“Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”<br />
<br />
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.<br />
<br />
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a <u>different place</u>. So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts.<br />
<br />
But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there.<br />
<br />
And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.<br />
<br />
Will Livingston wrote a great song about the experience. You can listen to it here <a href="http://www.reverbnation.com/play_now/song_1327570">Welcome to Holland</a> <br />
<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhL96TX0BmqFuMV-clBqwDCGhdvRF86_lKbRBS8s0_DHet1st-kcKJjWu6qfvsNRqGBQ30dob9ZhhRBsIrwBntlcGrLR-P_WcXFGnI8zUct-fGk07RqoFe3tAsu9cwncVXIh4S8xQ8AbR4/s1600/10782danger.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhL96TX0BmqFuMV-clBqwDCGhdvRF86_lKbRBS8s0_DHet1st-kcKJjWu6qfvsNRqGBQ30dob9ZhhRBsIrwBntlcGrLR-P_WcXFGnI8zUct-fGk07RqoFe3tAsu9cwncVXIh4S8xQ8AbR4/s200/10782danger.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b><i>When Do You Push the Panic Button?</i></b></td></tr>
</tbody></table><div class="MsoNormal">Life is filled with suffering.<span> </span>Every day, someone, somewhere is dealing with a life tragedy.<span> </span>A loved one dies, a child becomes ill, a business fails, a family is ripped apart by divorce, or someone is betrayed by a once-trusted friend.<span> </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">We ask why bad things happen to good people. It is because suffering is part of the human condition. And the only thing that we can really control is how we react to life’s challenges.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Charles R. Swindoll, American writer and clergyman said “<b>Life is 10% what happens to you and 90% how you react to it</b>.” I have tried to live by this advice, but have found that in some instances I have taken it to an extreme.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Early in my professional career, I learned about two important concepts that deal with these situations.<span> </span>The first, called Risk Management, deals with identifying situations that might be a risk to the business and designing controls to minimize the chance it will happen.<span> </span>The other, called Crisis Management, deals with decisions that must be made when something bad happens.<span> </span>One concept is preemptive and the other reactive.<span> </span>Unfortunately, I have had the chance to use both of them in the past.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">While I did not realize it, I have transferred these techniques to my personal life.<span> </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">And even though they help me sleep better at night, I found that they can become a terrible burden when practiced to an extreme.<span> </span>I’m talking about expecting the worst possible outcome from each life situation and trying to plan for it using Risk and Crisis Management techniques.<span> </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">I've discovered that rarely do these awful situations actually happen.<span> </span>Yet by preparing for them, we deal with the anxiety and pain <u>as if it was real</u>.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Psychologist Albert Ellis calls this <b>awfulizing</b>. Awfulizing exaggerates the consequences of the past, present and future, conceptualizing events as being terrible and horrible--the worst that can happen.<span> </span>Research has tied awfulizing to anxiety, anger, depression, shame, guilt and hurt.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Awfulizing can also result from repeated painful situations.<span> </span>Remember the old saying “fool me once, shame on you … fool me twice, shame on me”?<span> </span>Once we have lived through painful experiences over and over again, we begin to expect that they will happen.<span> </span>But often they don't. And when we anticipate these painful events and try to manage them in advance, we can needlessly bring stress and anxiety into our lives.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Having parented a child with a severe medical problem for two decades, I have a developed the tendency to awfulize.<span> </span>I imagine that I can predict a medical situation occurring and feel compelled to try and prevent it—even though that is rarely possible.<span> </span>There are two problems here.<span> </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">First is that I bring the stress and pain of a medical emergency on myself and my family even though it has not (and may not) occur.<span> </span>I justify this to myself because I see myself fulfilling my job as provider and protector of my child.<span> </span>I want to try and stop the pain and hurt. And I don’t want to get surprised. But the reality is that I can inadvertently bring suffering on my family when it was not necessary.<span></span> </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">The second problem of my awfulizing is that by trying to be proactive, I can actually take action that creates a problem.<span> </span>Unnecessarily consuming expensive medical resources, over-medicating, and over-protecting all have potentially serious consequences.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Now that I recognize awfulizing and its potential negative impact, I have taken some steps to try and control myself.<span> </span>When presented with a situation, I now ask myself … <span> </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><b>Do I have all of the information?</b><span> </span>Awfulizers often have only some of the information and are guessing at the rest.<span> </span>The solution is <u>DON’T JUMP TO CONCLUSIONS</u>. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><b>Am I exaggerating the information?</b><span> </span>People who exaggerate are prone to awfulize.<span> </span>That is because when they expand the severity and scope of the information, it can quickly move to the worst-case scenario.<span> </span>The solution is to <u>KEEP IT REAL</u>.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><b>What do others think?</b><span> </span>There is truth in the saying that “two heads are better than one”.<span> </span>Discussing the situation with another can expose the lack of information or exaggeration.<span> </span>The solution is to <u>GET ANOTHER OPINION</u>.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Most importantly, I have empowered my wife Kathy to bring these situations to my attention.<span> </span>When she “calls me out” for awfulizing, it raises my awareness and helps me to control myself.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">I hope that if you are an awfulizer, you might gain some wisdom through my experiences.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">PEACE<br />
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</div>Lee Stagnihttp://www.blogger.com/profile/08073644900873940799noreply@blogger.com0tag:blogger.com,1999:blog-6499004750538789964.post-23173853732164435232010-11-19T16:03:00.002-06:002010-11-19T16:24:54.832-06:00Defeating Denial<div class="MsoNormal"><span class="body">“I believe we're all in denial about the people we love.</span>” David Geffen</div><div class="MsoNormal"><br />
</div><div class="MsoNormal"></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAMWiXp67sHqpsuGy-JNyDqWnADw5KdB39YP7ChiF5Z6VHg0k0c4ShIQDUFoFtcpSGqZAHl1zZMo63Y1IgkazMDpyvNzLsZ2JG3XdCCuGO42HcaxQVscf51Z6rxFtVI6XsfY01PNCxphU/s1600/head-in-the-sand.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="188" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAMWiXp67sHqpsuGy-JNyDqWnADw5KdB39YP7ChiF5Z6VHg0k0c4ShIQDUFoFtcpSGqZAHl1zZMo63Y1IgkazMDpyvNzLsZ2JG3XdCCuGO42HcaxQVscf51Z6rxFtVI6XsfY01PNCxphU/s200/head-in-the-sand.JPG" width="200" /></a></div><div class="MsoNormal">Freud defined <i>denial </i>as a human defense mechanism that arises when a person is faced with a certain fact that is too painful to accept, and who then insists that it is not true ... despite overwhelming evidence to the contrary. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Another way to think about denial is that we simply stick our head in the sand so that we don't have deal with our problems. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Sound familiar? </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Many parents reach a state of denial when their child is diagnosed with a chronic medical problem. While they know that their child is different, they want to believe that it will pass--that the child will "out-grow" the symptoms. But we know the truth. As painful as it may be. Our child will forever be different.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Denial is also the first of the five steps defined by Elizabeth Kulber-Ross in her renowned grief loss model. The denial step is followed by Anger, Bargaining, Depression, and finally Acceptance. She hypothesizes that a person must pass through each step if they are to achieve long-term peace.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">You would be amazed how many people spend their lives struggling to get through the denial stage!</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">When you get stuck in the denial stage, it not only impacts you ... it holds others back as well. And when a parent is in denial about their child, their decision-making can be impaired. If they have not accepted that their child is disabled, they fail to advocate for the child. In today's complex health care world, advocacy is a vital component in identifying and securing the critical support services needed to maximize the child's health and life potential.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal"></div><div class="MsoNormal">I went through the denial stage when Melissa was diagnosed with propionic acidemia and that she had brain damage resulting from her hyperammonia-induced coma at four days of age. But it quickly became apparent to me that her health (maybe even her life) was going to be in my hands once she came home from the hospital. That is because this disease is treated with "diet management". We were required to concoct a special formula for her, the recipe for which varied depending on her health status. We had to walk a fine line. The formulation would restrict her protein intake (the very fuel of life). If we gave her too little protein, she would not grow. If we gave her too much, she would become violently ill and head to the hospital where she spent painful weeks while they "regulated" her system.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">If I had been in denial, then I would have refused to accept this important role and there is no doubt in my mind that her long-term outcome would not have been as successful as it has been. Embracing this role was critical in personally accepting that she was, indeed, inflicted with this life-threatening disease. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Denial can also be a relationship-killer. When one parent moves through the grief process and the other gets stuck, tensions rise. The accepting parent seeks out the best care for the child. The denying parent objects, seeing no reason why such care is necessary. The denier may even resist the child's medical diagnosis--which is critical in obtaining the proper care.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">While I had moved from denial toward acceptance, my wife Kathy got stuck along the way in the depression stage. She blamed herself for Melissa's condition. And each time that Melissa got sick (something that was common and unpreventable) she would blame herself. I have to admit that each time Melissa became ill, I too searched for something (or someone) to blame. But soon it became apparent that only the disease was to blame.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span style="font-size: small;">Over the past 20 years we have met many parents who are struggling with a journey similar to ours. We watched as they struggled, remembering how we felt when that happened to us. And sadly, we have seen many marriages end in divorce. And in virtually all of these cases, I suspect the root cause was that one (or both) of them were stuck in denial.</span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal">When asked how we survived, I offer up a few tips. <b> </b></div><div class="MsoNormal"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieZfcdNRGqLMac3Ik9FPxnofvooRWZPCzfrLHsZlGV5LQUnImEuoqQNiEgxfLBrAgdl8AjHMjhgq5GtJWZh3eCZPEwQDII0Rq1NeXlEZGGtXJ6U9qoZQd-d6EjY48lYcy50ZYVWg-42HQ/s1600/nile+river.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="140" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieZfcdNRGqLMac3Ik9FPxnofvooRWZPCzfrLHsZlGV5LQUnImEuoqQNiEgxfLBrAgdl8AjHMjhgq5GtJWZh3eCZPEwQDII0Rq1NeXlEZGGtXJ6U9qoZQd-d6EjY48lYcy50ZYVWg-42HQ/s200/nile+river.jpg" width="200" /></a></div><div class="MsoNormal"><b>Denial - Not a River in Egypt.</b> <span style="font-size: small;">Writer Mark Twain made this line famous, but it is so true. Denial is a real human condition. A natural thing that we all encounter. But to defeat it, you must understand that it exists and make the personal decision to overcome it and move on. Talk about your feelings with family and friends. If you are a spiritual person, pray for the strength that you need. And if all else fails, seek professional help. We did. And it works!</span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><b>Don't Give Up.</b> Have a heart-to-heart discussion with your spouse. Talk about the impact that your disabled child will have on your life. And together make a decision that this experience will make your marriage stronger ... not pull it apart.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><b>Balance the Load.</b> One of the most common issues that couples encounter when managing a special needs child is the additional work-load. Those tasks might be medical-related. Or they might be related to doctor and therapy appointments or school meetings. And in today's world, there is a good chance you both will be working. We learned to divide the work load between us. This helped us from "burning out" under the pressure. And it also quickly became apparent that caring for our special child would take BOTH OF US. Another reason to stay together and work as a team.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><b>Reach out to Others</b>. When Melissa was young we joined a local support group for parents of special needs children. I can remember that first meeting like it was yesterday. I looked around at the other parents and their children. I remember thinking how <i>lucky </i>we were, because caring for Melissa was not nearly as difficult as the task they faced. It's interesting how seeing the challenge of others helps put your own situation into perspective. For the past decade we have lead a global support group for parents and professionals dealing with metabolic disorders like Melissa's. We have shared our life journey with other parents in the group. And this process has not only helped them, but has been very therapeutic for us as a couple. </div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><b>Start Dating Again</b>. We were lucky to have live-in nanny's for Melissa. We found young women who wanted to take a year off between high school and college and we hired them to move in with us and care for Melissa when we were at work and some evenings so that we could go on a "date". The time away gave us time to <i>heal</i>. And looking back, I believe this was one of the things that helped us win the war against depression and divorce. I realize that this approach isn't feasible for everyone. But you can turn to family and friends to give you a much-needed break. Even a battery needs re-charging!</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Remember that becoming a parent of a special needs child isn't something you asked for. And you are not the first nor the last couple to face these challenges.<br />
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Don't let denial hold you back. Use it as a catapult to move forward in your healing process. While it might not seem so, life CAN and WILL get better.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">PEACE</div><div class="MsoNormal"><br />
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</div>Lee Stagnihttp://www.blogger.com/profile/08073644900873940799noreply@blogger.com0tag:blogger.com,1999:blog-6499004750538789964.post-83042266497260919692010-11-15T18:23:00.001-06:002010-11-16T08:04:33.774-06:00And When I Am Gone<div><div style="background-color: transparent; border: medium none; color: black; overflow: hidden; text-align: left; text-decoration: none;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhi4KaLbvEkWbnO8njxPbG7C8QdgnusuqwsSclPHDM57kOSLM1nMNYgXmFcZWLcoTqwCSd3qcTiOTgAU2ZDWaJTsJeZM1VxqbLuQ8Q49-sU5WvJ-zT1996OXAWzdYeGA7gAdBi1UDsg6hM/s1600/boy_scouts_logo.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhi4KaLbvEkWbnO8njxPbG7C8QdgnusuqwsSclPHDM57kOSLM1nMNYgXmFcZWLcoTqwCSd3qcTiOTgAU2ZDWaJTsJeZM1VxqbLuQ8Q49-sU5WvJ-zT1996OXAWzdYeGA7gAdBi1UDsg6hM/s200/boy_scouts_logo.jpg" width="178" /></a></div><div class="headArticles"><span style="font-size: large;"><b>ONCE UPON A TIME</b></span> <span style="font-size: x-large;">... </span></div><div class="headArticles"></div><div class="headArticles">I was a boy scout. </div><div class="headArticles"></div><div class="headArticles">And while this was nearly 50 years ago, I will never forget the motto found in the official scout handbook <span style="font-size: large;">"<b>Be Prepared</b>"</span>. </div><div class="headArticles"></div>While my scouting merit badges and medals were stored away long ago, I have lived my life by this motto. I have tried to anticipate problems that might arise, and then prepare for it. I admit that sometimes this has become an obsession. I have to constantly remind myself that one can't prepare for every possible situation. But taking this view of life has paid benefits when faced with the challenges of parenting a special needs child.</div><div style="background-color: transparent; border: medium none; color: black; overflow: hidden; text-align: left; text-decoration: none;"><div class="headArticles"></div><div class="headArticles">When my daughter Melissa was diagnosed with a rare metabolic disorder, the medical community was just learning how to best manage the condition. Following her neurological trauma at four days of age, the doctors were unsure about the long-term impact. They knew there was brain damage, but had no idea to what extent. Would she ever walk? Or talk? Or be able to care for herself? At that time, only God knew the answer to these questions. </div><div class="headArticles"></div><div class="headArticles">Over the past 20+ years, we have discovered that managing Melissa's health and her development required a lot of advance planning. We always had "Plan B" when we traveled, because we could not count on the airlines to deliver us to our destination on time. We obtained a "treatment letter" from her physician and a <a href="http://www.medicalert.org/">Medic Alert</a> bracelet that would provide guidance for emergency room personnel in the event that she became ill when we were away from home. We tracked her medications diligently. And we became advocates for her education and special therapies. We credit this advance planning with her ability to "beat the odds". Today she is one of the oldest (longest surviving) people with her specific metabolic disorder.</div><div class="headArticles"></div><div class="headArticles">When Melissa was little, it dawned on me that no matter how prepared I might be to help her, the day would come when I would no longer be there. That day might be long into the future; or it might be on the drive home from work ... the result of some unexpected tragic event.</div><div class="headArticles"></div><div class="headArticles">Had I prepared for Melissa's continued care if I was gone? The answer was no. </div><div class="headArticles"></div><div class="headArticles">Have you asked yourself this question?</div><div class="headArticles"></div><div class="headArticles"><div class="headArticles">You might answer -- I have other children and they will take care of my special needs child.</div><div class="headArticles"><br />
</div>If this is your response, then I suggest you might want to re-think your plan. Your other children have their own life. Do you really want to put this responsibility on them? As you have discovered, managing someone with special needs is life-changing. And that care is expensive.</div><div class="headArticles"><br />
</div><div class="headArticles">Your response to this might be -- I have life insurance and my child can use that when I die.</div><div class="headArticles"><br />
</div><div class="headArticles">Maybe so, but there are other things that you must consider beyond money. Disabled adults require special care. They may need a guardian to help them make important decisions. They may need someone to help them with daily living skills and medications. These services are offered by public assistance, but only to those who "qualify". </div><div class="headArticles"><br />
</div><div class="headArticles">Disabled individuals qualify for certain public benefits that are designed to support their living needs and their medical needs. Programs such as Supplemental Security Income (SSI) and Medicaid offer a minimum level of support and to qualify, the individual must have virtually no assets. So if you set up a savings account for them to use when you are gone, or if you leave them a house to live in, those assets may well disqualify them for the public assistance services they will need. </div><div class="headArticles"><br />
</div><div class="headArticles">Our solution was the creation of a "supplemental needs" trust. </div><div class="headArticles"></div><div class="headArticles">A trust is a legal "entity" that is formed to own assets such as cash, insurance policies, or in some cases real estate. Supplemental or special needs trusts are unique in that they are created expressly for the purpose of providing resources for the beneficiary (your child) based on some set of circumstances (such as if you die). And by law, the assets held in these trusts are excluded from the beneficiary's assets so that they can qualify for public services. </div><div class="headArticles"><br />
</div><div class="headArticles">Special needs trusts are complex and should be designed by a qualified attorney. </div><div class="headArticles"></div><div class="headArticles">We established a supplemental needs trust for Melissa long ago. But then the question became, how to "fund it". The solution came from a friend who is a broker and also the father of a special needs child. Our approach was to have the trust purchase a second-to-die life insurance policy on both Kathy and me that funds the trust when neither of us are there to support her We found the policy very affordable. We made the maximum annual contributions to the trust each year (avoiding the gift tax) until the value in the policy ensured that the premiums would be paid for the rest of our lives. That being done, we no longer have to worry about where the money to support Melissa will come from when we are gone. We are now <b>PREPARED</b>.</div><div class="headArticles"></div><div class="articleType clearfix">In 2004, the Minneapolis St. Paul Business Journal wrote an article about my broker/friend's planning strategy for parents with special needs children. Here is a <a href="http://www.docstoc.com/docs/document-preview.aspx?doc_id=62007914">link</a> to the article. </div><div class="articleType clearfix"></div><div class="articleType clearfix">There are many other considerations if you are planning for your special needs child's future. This is just one of them. An updated Last Will and Testament for you and your spouse is also a good idea so that you can direct the care of your child after your passing. Planning for legal guardianship is also a good idea so that when your child reaches the age of majority (18) you can continue to provide oversight and guidance. </div><div class="headArticles"><div class="articleType clearfix"><div class="headArticles"><br />
</div><div class="headArticles">Thinking about these things is never easy. But once they are in place, you can rest easier knowing that your loved one who survives you will be well cared for -- just like they would be if you were there.</div><div class="headArticles"><br />
</div><div class="headArticles">PEACE</div><div class="headArticles"><br />
</div></div></div></div></div>Lee Stagnihttp://www.blogger.com/profile/08073644900873940799noreply@blogger.com2tag:blogger.com,1999:blog-6499004750538789964.post-46198217387424049242010-11-12T10:28:00.000-06:002010-11-12T10:28:40.344-06:00Adapted Athletics Gets an A+We have all been to high school. Some of us participated in the school's sports programs. We all know that the "athletes" who walk the halls brandishing their Letter Jackets are often viewed by others as top performers. Their stature and self-esteem is boosted by not only their personal achievements, but by peer acceptance and support. And if you are a parent of a high school sports participant, you know how gratifying it can be to watch them mature as they excel in their chosen activities.<br />
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As a parent of a student with a disability you realize that they might also benefit from participation, but all to often they are excluded. Sometimes the exclusion is for valid reasons such as for fear that they might become injured. Other times the exclusion is more sinister. Athletic directors are focused on fielding the "best" athletes and "winning" for their school's program. Having disabled students on the team would undermine those objectives.<br />
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In Minnesota we solved this problem with the launch of the <b>Minnesota State High School League Adapted Athletics Program</b>. In November 1992, the Star Tribune newspaper reported: "<i>In an emotional and unanimous vote, the Minnesota State High School League welcomes athletics with disabilities into its family."</i> <br />
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The Adapted Athletics program, artfully designed with input from coaches, educators, former players and high school league officials, provides disabled students with a unique opportunity to participate in a wide variety of sports. Not only does participation help these students strengthen their physical abilities, it offers a powerful tool to help build self-esteem. <br />
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The program focuses on giving student athletes the opportunity to discover and/or improve their individual skills in: goal setting, pride and self-confidence, friendships, leadership and teamwork, competitiveness, graciousness (win or lose), physical conditioning/wellness, concentration and intensity, a sense of community and belonging, and commitment and dedication.<br />
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Adapted Athletics offers two programs: PI (physically impaired), and CI (cognitively impaired). All sports are held indoors and include Adapted Soccer, Adapted Floor Hockey, Adapted Softball and Adapted Bowling. Teams compete at regional and state levels. Participants are recognized for outstanding achievement. All participants earn "letters" in each sport. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2vyKvxQTrowQdtdj_s2pS8IVTGyIci8Ot8iG_CrfdsQkXTGvIpdzVhIP4kk7reZSvVOJRKb00Vl9b1m4T0_1ipRpsBU4tRaYRnXslXFcKU9r4bqnSWgSN9Jp86_8r68_bixcVk_muL1Y/s1600/scan0008.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2vyKvxQTrowQdtdj_s2pS8IVTGyIci8Ot8iG_CrfdsQkXTGvIpdzVhIP4kk7reZSvVOJRKb00Vl9b1m4T0_1ipRpsBU4tRaYRnXslXFcKU9r4bqnSWgSN9Jp86_8r68_bixcVk_muL1Y/s200/scan0008.jpg" width="158" /></a></div>This program works. I know because my daughter Melissa participated in adapted athletics starting in seventh grade and continued through high school. She played each sport and improved noticeably each year. In fact, during her junior year, her bowling team won the State Championship. <br />
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I have found no greater joy in life than watching these athletes play. They give it their "all". They have fun ... win or lose. And maybe most importantly, they are recognized by their non-disabled peers. I've seen many of those athletes befriend Melissa something that may not have happened had she not participated in the program! Here is her graduation picture taken with her coveted letter jacket--something she still wears today!<br />
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If your child's high school does not offer an Adapted Athletics program, point them north to Minnesota to discover the success we have achieved. For more information, follow this link to the <a href="http://www.mnadaptedathletics.com/index.html">Minnesota Adapted Athletics Association</a><br />
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I give Adapted Athletics a grade of A+. Get it into your school today.Lee Stagnihttp://www.blogger.com/profile/08073644900873940799noreply@blogger.com3tag:blogger.com,1999:blog-6499004750538789964.post-19086367857918331782010-11-11T11:16:00.001-06:002010-11-22T09:47:55.461-06:00Don't Bully my BabyAs a father of a special needs child, I am constantly on alert for symptoms of bullying. We know that children with disabilities are "different" and this often becomes a lightening rod for those children who seek out the weak and prey on them!<br />
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When my daughter Melissa was 12 and in seventh grade (2000) she came home one day and told me that some kids at school were calling her names. I was enraged. How dare these <b>punks </b>make fun of my baby! We made the standard phone call to the school, alerting them to the situation. But I feared that while they may try to correct the situation, those efforts might fail.<br />
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So I decided to take matters into my own hands.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgu__I8pDTCpNCuYaCnHdmteFMzvFF6oelrtaDhPuSsnLs5CLJASH-39QIMWOa4qd0YkcAhzNocy-TIoPJfmrXB3ag2zlIpf2vjtrb-IR2dqMJEhI0UxovLlOySg-ke4dvrAeyZd_AXKW0/s1600/scan0007.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="135" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgu__I8pDTCpNCuYaCnHdmteFMzvFF6oelrtaDhPuSsnLs5CLJASH-39QIMWOa4qd0YkcAhzNocy-TIoPJfmrXB3ag2zlIpf2vjtrb-IR2dqMJEhI0UxovLlOySg-ke4dvrAeyZd_AXKW0/s200/scan0007.jpg" width="200" /></a>Nothing impresses young punks like motorcycles. Bikes are cool and the assumption is they are ridden by "tough guys". Just so happens that at this time I owned a Harley Davidson. It was LOUD and it was fast. Melissa loved to ride with me. So this gave me an idea.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh52X5iWJJxY3QbBJDDIy650PCa9s7cbGXO8eIOw_HGypQ1OQv80NalC-Ys5Q1basXvo0hg2wlaWhezGWbuWmjP_HnBVJcgihCRIgJb2pm94YE-ShlSecQzRtB4c4cJj1Zha9k6U4yBs6Q/s1600/scan0012.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="136" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh52X5iWJJxY3QbBJDDIy650PCa9s7cbGXO8eIOw_HGypQ1OQv80NalC-Ys5Q1basXvo0hg2wlaWhezGWbuWmjP_HnBVJcgihCRIgJb2pm94YE-ShlSecQzRtB4c4cJj1Zha9k6U4yBs6Q/s200/scan0012.jpg" width="200" /></a></div>I told her that rather than ride the bus home, I would pick her up at school the next day. You guessed it ... i took the HOG. I arrived at the school before classes were dismissed. I parked right in front so that all the kids coming out would see me there. The bell rang and kids started streaming from the front door. And there was Melissa. When she saw me sitting there on the bike, her eyes lit up. She came over, put on her helmet, and we soon roared down the driveway as she waved goodbye to her friends. It was quite a spectacle. Every boy standing there saw Melissa on that motorcycle. And they saw her "bad-ass" Dad with her!<br />
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Suffice it to say that the teasing stopped. <br />
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Bullying in school is now news. I recently saw one story about a father whose daughter was being accosted on the bus and he lost his cool, and after confronting the kids on the bus, was <a href="http://veracitystew.com/2010/09/17/father-arrested-after-threatening-daughters-bullies-on-bus-video/">arrested and now faces criminal charges</a>.<br />
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One reason the media has focused on this issue stems from a recent letter sent by the U.S. Department of Education to schools, colleges and universities, offering them <a href="http://www.ed.gov/news/press-releases/guidance-targeting-harassment-outlines-local-and-federal-responsibility">guidance regarding harassment</a>. The guidance focuses on legal obligations to protect students from student-on-student racial and national origin harassment, sexual and gender-based harassment, and <b>disability harassment.</b><br />
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It was great to see that children with disabilities was included. <br />
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As a father whose mission is to protect his vulnerable child, what can be done?<br />
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I do not endorse trying to handle things personally. That will only lead to trouble for you and if you are in jail, then who will be there to protect your child? A better approach might be educating and then communicating with your kid. <br />
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Some children with cognitive impairment have difficulty recognizing when they are being harassed. To help them better recognize when they have become a target, I believe that the process begins with education. We often look to schools to offer this, but sometimes that just doesn't happen.<br />
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I found this great web site that offers a number of powerpoint presentations that help you<a href="http://facs.pppst.com/bullying.html"> Talk About Bullys</a>. Depending on your specific situation, you might find some ideas here that could help broach the subject of bullying with your child.<br />
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Once they recognize a bully, then they are better equipped to avoid them--or report them if they become a target.<br />
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When I saw the recent news reports on bullying, it brought me to ask Melissa about her own experiences. We have had the conversation in the past and she understands about bullys. And I have assumed that she would tell me if she was bullied. But I had long forgot that conversation.<br />
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I asked her, "Melissa have you been bullied?" Her answer was "No, Dad". Good thing, because I sold that Harley years ago.<br />
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PEACELee Stagnihttp://www.blogger.com/profile/08073644900873940799noreply@blogger.com3tag:blogger.com,1999:blog-6499004750538789964.post-11303760304619629892010-11-10T08:58:00.000-06:002010-11-10T08:58:08.050-06:00Magnificent Make-a-Wish<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYPjUsYe5XagL-LXaPiZv-e-AZ3v3bv0Yv6qCIMoXrpUXEOQ8q3xyYMlg577H9cdsxZ3YC_LMv-Qu_51dMhlf07a7ELNzfrD1j9CSy3pVupeSzzrVm01HQAO_1tZGejnN0c2ng0b2-uNI/s1600/make+a+wish+logo.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="70" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYPjUsYe5XagL-LXaPiZv-e-AZ3v3bv0Yv6qCIMoXrpUXEOQ8q3xyYMlg577H9cdsxZ3YC_LMv-Qu_51dMhlf07a7ELNzfrD1j9CSy3pVupeSzzrVm01HQAO_1tZGejnN0c2ng0b2-uNI/s200/make+a+wish+logo.jpg" width="200" /></a></div><a href="http://www.wish.org/">Make-A-Wish</a> has granted over 200,000 wishes to children since its beginning in 1980 when it granted one boy's wish to be a police officer. Today, the foundation reports granting a child's wish in the U.S. every 40 minutes!<br />
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<div class="separator" style="clear: both; text-align: center;"></div>The organization serves children 2½ through18 who have a medical diagnosis with a life-threatening medical condition – i.e., a progressive, degenerative or malignant condition that has placed the child’s life in jeopardy. After determining a child's eligibility, a volunteer is sent out to meet with the child and discover their one true wish. <br />
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Common wishes are for trips to Disney, popular cities or even foreign countries; to travel and see far away family or friends; to live exciting careers; to receive special gifts such as play sets; or to meet famous people. The wishes are as varied as you can imagine. And the foundation magically makes them happen.<br />
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When my daughter Melissa was 16 (2004) we heard that other children with metabolic diseases similar to hers had qualified for a Wish. We investigated the program and discovered that because of the life-threatening nature of her disorder, she qualified. We applied and she was accepted.<br />
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I remember how exciting it was to sit down with her and explain the program. We then had a long talk about what she might ask for. We explained what other kids had received, but since she was already a "teenager" she had other ideas. <br />
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The day came when the Make-a-Wish volunteer arrived at our door. We all sat in the living room and she explained the program to Melissa and asked if she had decided what she wanted. To our amazement, Melissa had come to the decision that she wanted to meet "teen idol" <a href="http://www.hilaryduff.com/">Hiliary Duff</a> who at the time was the star of Disney television series <i>Lizzie McGuire</i>. Hiliary had since branched out into movies and music. While just a year older than Melissa, Hiliary was packing them in at concerts across the country. <br />
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At hearing Melissa's wish, the volunteer smiled. We were lucky because Hiliary was one of a small group of entertainers who regularly worked with the foundation. Even more amazing was that Hiliary had an upcoming concert right here in Minneapolis. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwO-MXngDmkD9Cd8LzmS8yJmflaSjeavtGzb9ytDXW0jzEHj4cJRh1a7yri_yOAHPNPSnPtNVKGWo28WkdAF9Zx5UmiXOhpdUdpjnu4UUTSohRrnN1YpRxsWKJlTtnd4yMVZ8q0Z_YXb4/s1600/Melissa+and+Hiliary.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwO-MXngDmkD9Cd8LzmS8yJmflaSjeavtGzb9ytDXW0jzEHj4cJRh1a7yri_yOAHPNPSnPtNVKGWo28WkdAF9Zx5UmiXOhpdUdpjnu4UUTSohRrnN1YpRxsWKJlTtnd4yMVZ8q0Z_YXb4/s200/Melissa+and+Hiliary.jpg" width="135" /></a></div>Make-a-wish did a great job orchestrating the event. Melissa was given six front-row tickets to the concert. She invited her mom and a small group of her best friends. A big black stretch limo arrived the evening of the concert and carried them all downtown. <br />
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Melissa received a special back-stage pass and had the opportunity to meet and talk with Hiliary before the concert. You can only imagine her excitement. Here they are posing for a once-in-a-lifetime picture. Hiliary was great. She was patient, asked Melissa a lot of questions and made Melissa feel totally at ease.<br />
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The best part was yet to come. As Melissa and her friends sat in the front row enjoying the concert, Hiliary gave them a "shout out" between songs. In that moment, they became part of the concert themselves. And while it may seem a bit trivial, Hiliary gave Melissa a special gift that she will never forget.<br />
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Wishes are forever. Even though this event happened six years ago, Melissa can tell the story as if it happened yesterday. Make-a-Wish is truly Magnificent. If you have the opportunity, please support their fine work generously.<br />
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PEACELee Stagnihttp://www.blogger.com/profile/08073644900873940799noreply@blogger.com0tag:blogger.com,1999:blog-6499004750538789964.post-33040444433952572722010-11-09T08:29:00.000-06:002010-11-09T08:29:15.407-06:00The Gift of TextingMany individuals with cognitive impairment have auditory processing issues. That is to say that their brain can't keep up with the "pace" of a face-to-face conversation. The result is that they either avoid conversations or if they make the attempt, they struggle with often less than desirable results. <br />
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My daughter Melissa has this issue. As a result of her initial neurological assault when she was four days old, her brain was injured and she has auditory impairment. When she was young, she avoided interactive conversations. She would keep her head down and avoid eye contact which is the common signal for engaging in a verbal conversation. She has had considerable speech therapy which has helped some ... but the processing capacity of her brain has never improved. She can communicate with us but formulating expressive conversation is a challenge.<br />
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Several years ago we bought Melissa a cell phone. Our idea was to keep her in communication with us while at school, work, in-transit on the bus, at friends houses, etc. Little did we know that what we had really given her was a powerful expressive communication tool!<br />
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As you know, the process of texting is the formulation of a message which is sent and then responses received. The "pace" at which a texting conversation transpires is determined by the speed at which the sender and receiver exchange messages. There is no face-to-face pressure to respond immediately to a question. With texting, the person receiving the message can take as much time as they like to "process" the information and formulate a response. <br />
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Melissa is now able to freely communicate her thoughts to us ... via texting. She composes messages that contain questions and thoughts that frankly we never knew were captured in her brain struggling to get out! Via texting, she can tell us about her fears, concerns, wants, pains, and a lot more. As she started to use this new communication medium to "speak" with us, we were amazed at the depths at which she was thinking. Because she hadn't been able to tell us before, we had no idea that she had these thoughts. Now her inner world was open to us.<br />
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She fully understands the power that texting provides. In fact, she has started to bring a note tablet along with her when she is going to be around others who themselves have a similar auditory issue. They use the tablet for real-time in person texting. It is amazing to watch them communicate (and even sometimes read what they wrote on the tablet to get an idea of what kinds of things they are dealing with).<br />
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The moral of the story is that if your child is challenged with expressive speech, consider a Gift of Texting. It will open a whole new world for them (and for you as well). <br />
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One final note. When selecting your mobile phone plan, make sure to elect the "unlimited text" option. Melissa averages about 3,000 text messages a month!<br />
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PEACELee Stagnihttp://www.blogger.com/profile/08073644900873940799noreply@blogger.com2tag:blogger.com,1999:blog-6499004750538789964.post-86730405300728718412010-08-12T14:59:00.003-05:002010-08-12T16:09:49.814-05:00The Work Impact<span style="font-size: large;">Depending on the severity of your child's special needs, your work life will be impacted. Over the past 20+ years I have thought about this often. What is the impact on both my job and my wife's as well? Here are some thing where I believe we all have some exposure.<b> </b></span><br />
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<div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><span style="font-size: large;"><b>MEDICAL COSTS</b>. If you have a family health insurance policy at work, your child's claims under that policy <i>might </i>have an impact on the future rates charged to all members of the group. This is because some policies are based on actual experiences and as claims rise, so do future rates. If this happens to you, could your continuing employment be seen as a liability? If the employer ever acted on such a thing it might be construed as discrimination, but who wants to deal with all of that?<b> </b></span><br />
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<div class="separator" style="clear: both; text-align: center;"></div><span style="font-size: large;"><b>SOCIAL STIGMA</b>. You have discovered that in your private life, friends and even family are afraid to interact with you because they are uncomfortable with the whole health/disability issue. They don't know what to say; how to act; or are afraid that you might ask them to help with your child. When this happens at home, you can deal with it. But what if this happens at work? What if it is your supervisor or fellow-employee who can't face you? Sometimes such a situation can limit career advancement -- or even put your employment at risk. Most jobs generally require that you work with others. If they won't work with you, how can you perform the job?<b> </b></span><br />
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<div class="separator" style="clear: both; text-align: center;"></div><span style="font-size: large;"><b>TRAVEL</b>. You can't be two places at the same time. Many jobs require travel. Some more than others. And many special needs children require hands-on support from both parents. When work demands you travel and life demands you be home, what can you do? If you refuse to travel, your job is at risk. If you leave home, are you shirking your responsibility as a parent? <b> </b></span><br />
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<div class="separator" style="clear: both; text-align: center;"></div><span style="font-size: large;"><b>JOB FOCUS</b>. Every day of parenting a special needs child brings another challenge. Even if your spouse is handling them, as a father you are expected to provide advice, support and encouragement. And since by definition a crisis can't be planned, they are likely to emerge during work hours. These distractions can lower productivity, increase the frequency of absences, cause more work errors, and can negatively impact overall job performance. This is a particularly important area that fathers should watch because they all are legitimate grounds for job dismissal.<b> </b></span><br />
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<div class="separator" style="clear: both; text-align: center;"></div><span style="font-size: large;"><b>FINANCES</b>. Even with insurance coverage, your special needs child will be costly. This may result from having only a single income (your spouse stays home to care for the child). Or it may result from medical costs beyond your policy coverage. Employers are constantly on the watch for employees who might have financial struggles because sometimes those employees become a risk (theft, violence, other behavior issues). If you are changing jobs and your credit score has been down-graded due to financing challenges, you may find that this becomes a red-flag with prospective employers. </span><br />
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<span style="font-size: large;">These factors are daunting, but need not be fatal. I have found that many of these issues can be avoided by adopting one simple philosophy -- be <u>OPEN </u>about your situation. By this I mean that rather than keeping private your situation as the father of a special needs child ... <b><u>promote </u></b>it. </span><br />
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<span style="font-size: large;">With nearly 30 years of experience in marketing, I have found that a very effective method of promotion is through EDUCATION. This is because through the process of learning, both your awareness and sensitivity are increased -- which is exactly what you want to accomplish. There are a couple of basic approaches that you might want to consider. </span><br />
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<span style="font-size: large;">A more <i>formal </i>approach could be used in larger organizations. If your company has an employee newsletter, consider offering your story to them. They can interview you and then publish your story as an "employee overcomes challenges" storyline. The company benefits by being sensitive to employee issues. This also serves to put management "on notice" regarding any possible issues that result from your challenges. If the article promotes a tolerant workplace, then it would be difficult for them to later penalize you in these situations.</span><br />
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<span style="font-size: large;">When the formal approach won't work, consider handling the promotion yourself. You could try to get a story published in a newspaper, magazine, or even online. In the workplace, the promotion can start in a place where lots of employees and managers gather (such as a lunchroom). Take a trusted friend with you and start a conversation about your situation ... speaking LOUDLY. Others will be listening to the story, giving you the audience you need to accomplish your education mission. </span><br />
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<span style="font-size: large;">Whether formal or informal, your employer will benefit because an educated workforce spends less time gossiping and being distracted by the challenges of others in the workplace. Your co-workers benefit because they now understand your situation and can discuss it with you or offer support without fear of saying the wrong thing. And of course you benefit by minimizing the downside and possible impact that being a father of a special needs child can bring. </span><br />
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<span style="font-size: large;">I am sure that there are other areas where a father might be at risk in his job ... and other ideas that you might have to reduce or eliminate this risk. Please share your thoughts and experiences with our group.</span><br />
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<span style="font-size: large;">PEACE</span>Lee Stagnihttp://www.blogger.com/profile/08073644900873940799noreply@blogger.com0tag:blogger.com,1999:blog-6499004750538789964.post-53285888182030601242010-08-06T17:33:00.000-05:002010-08-09T16:11:41.713-05:00Dreams Lost<span style="font-size: large;">While few men would ever openly admit it, we all have "dreams" and aspirations for our soon-to-be-born offspring. Will it be a boy or girl. I think most guys want a boy because we can relate more easily. After all, we were all boys once. And there is some comfort in knowing the ropes (and the equipment that boys come with). We dream about all the things a father does with a son ... those special one-on-one times that may fade from your memory but never disappear. </span><br />
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<span style="font-size: large;">Believe it or not, I actually was hoping for a girl. Part of the reason was that my family had 3 boys and I always felt I missed something not growing up with a sister. Yea, I know ... you guys with sisters are laughing out loud thinking <i>little does he know</i>! Wishing for a daughter brings a different set of dreams and aspirations. Will she be smart? Beautiful? Talented? How will I feel when I walk her down the aisle on her wedding day? How many grand kids will she give me? It may sound strange, but its true (at least for me). </span><br />
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYGQuOZ6jq-1sfPRPhtaoFKolk6UAEKCQIP3oc7KiQR5S4C6qDecbNAcCCFDSSl40TZCzcY0BBwIGf7tQkfBNwDpV0q005ccObl_VJJgZd5ZESQL1w_nya1-mlDeOyTgLUIQMCf1NMtvY/s1600/Lee+and+Melissa.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYGQuOZ6jq-1sfPRPhtaoFKolk6UAEKCQIP3oc7KiQR5S4C6qDecbNAcCCFDSSl40TZCzcY0BBwIGf7tQkfBNwDpV0q005ccObl_VJJgZd5ZESQL1w_nya1-mlDeOyTgLUIQMCf1NMtvY/s400/Lee+and+Melissa.jpg" width="276" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My sweet Melissa only hours old</td></tr>
</tbody></table><span style="font-size: large;">No matter which you are hoping for, one thing that never even enters your mind is health. Because most babies are born healthy we rarely deal with the realities of birth-defects and the impact that they bring to a family. As fathers of a disabled child we are all well aware of this reality. And when it happens to us, our dreams are replaced with disappointment, fear, resentment and even anger. </span><br />
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<span style="font-size: large;">When Melissa was only 4 days old she fell into a coma. Fortunately we had not brought her home from the hospital and they were able to aggressively treat her which ultimately saved her life. I'll spare you the gory details, but what I remember most was sitting next to her "bed" (actually a platform under warming lights) in neonatal ICU with tubes running in/out of her and doctors and nurses hovering around her speaking in a language that was foreign to me. This went on for several weeks. Finally Melissa was stabilized and we were able to bring her home ... all 4 pounds of her! </span><br />
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<span style="font-size: large;">As I sat in our rocking chair holding and feeding her I couldn't help but feel sorry for myself. She survived, but the doctors were not optimistic about her future because she had experienced brain swelling and likely damage that would affect her for the rest of her life. Now rather than celebrating my new daughter, all I can think about is ... how can I raise a child that may not be able to function like other kids. </span><br />
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<span style="font-size: large;">One element of my personality that I've placed a high value on is my intelligence. I always imagined that my child would share that gift and together we would enjoy our own special intellectual connection. Now that would never be a reality. My baby's brain was injured and nobody could tell me what the impact might be. It wouldn't be until nearly20 years later that I've been able to create a connection with her -- on a different, but very special level.</span><br />
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<span style="font-size: large;">Share with us what dreams you had and then lost when you learned your child had a disability. Have you been able to replace those dreams with others? It can be done.</span><br />
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<span style="font-size: large;"> </span>Lee Stagnihttp://www.blogger.com/profile/08073644900873940799noreply@blogger.com0tag:blogger.com,1999:blog-6499004750538789964.post-44963682567470743002010-08-04T22:11:00.000-05:002010-08-05T19:11:59.587-05:00An Unforgettable MomentIf you have a child with special needs you will never forget the moment that you learned your life would change forever. For me, that moment came 21 years ago when my daughter was 5 days old. She had been in a coma for two days and was in neonatal ICU fighting for her life. Her doctor came to us and explained that our baby had a rare, life-threatening, incurable metabolic disorder!<br />
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgA8KD3iGWBGr5oA4x1GkYHdhKnWyCLD8fCAVzUdiNxJhRPEpC-LnlO93toNMRAa09IgebZgOd9r7BBG0oig99Se_xr1TwkVNbJ4rh35F3b9tqQ0X6uHTiQXwrWbUmJky400R3PxOAm2I/s1600/Melissa+newborn.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgA8KD3iGWBGr5oA4x1GkYHdhKnWyCLD8fCAVzUdiNxJhRPEpC-LnlO93toNMRAa09IgebZgOd9r7BBG0oig99Se_xr1TwkVNbJ4rh35F3b9tqQ0X6uHTiQXwrWbUmJky400R3PxOAm2I/s320/Melissa+newborn.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our sweet Melissa the day she was born.</td></tr>
</tbody></table>Like every other parent hearing a similar diagnosis, I was stunned. My wife Kathy had an easy pregnancy and there was no history of similar disorders in either of our families. We were taken totally by surprise. We were also first-time parents and understandably nervous, but our uncertainty quickly turned into confusion, fear and ultimately anger. Neither of us knew anything about medical procedures or management of complex diseases -- so how could we care for this sick child? The news also shook our Christian faith. Had we done something wrong and was God punishing us? We took comfort in the words of Mother Teresa who said ...<b><span class="body">"God doesn't require us to succeed; he only requires that you try.</span>"</b> And try we did.<br />
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This was the beginning of a personal journey. So long ago there was little advice available to help me find my way. Even today there is a void. While there are many books, articles and even blogs written about parenting special needs children -- these are written by talented, dedicated women and I find that they typically offer a mother's perspective. <br />
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In future posts I will explore those emotions and how they impacted my marriage, my lifestyle, my career, and my future. Some topics will be challenging, but challenges are what special needs children are all about.<br />
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Let us make this an interactive forum. I challenge you to participate in this discussion by sharing your own personal views and experiences. Together we can become better fathers for our special kids.<br />
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PEACELee Stagnihttp://www.blogger.com/profile/08073644900873940799noreply@blogger.com1