tag:blogger.com,1999:blog-380486262023-11-16T02:40:14.740-08:00Parenting An Adult with Complex Special NeedsThe empty nest does not happen in the same way when your child becomes an adult if he or she experiences some sort of special needs. This blog is to share the joys and struggles as we transition my son, Billy Ray, into adulthood.Peggy Lou Morganhttp://www.blogger.com/profile/13218318064439656924noreply@blogger.comBlogger18125tag:blogger.com,1999:blog-38048626.post-39979207128870405392010-12-05T04:53:00.000-08:002010-12-05T05:17:25.358-08:00We're Still HereWe haven't been posting for a while. There have been a number of reasons for our absence:<br /><ul><li>There has been going on in our lives some of which I plan to share in future posts both here and at <a href="http://parentingacomplexchild.blogspot.com/">Parenting A Complex Child</a>.</li><br /><li>Additionally, I have been anxious about what I call an internet stalker who has been harrassing me off and on the past couple of years. Pictures have been taken from my websites and used in inappropriate ways as well as other things.</li><br /><li>Finally, at times I feel a little discouraged because it seems that we are not always practicing what I preach about methods because of Billy Ray's health.</li></ul><p>Enough of that it is time to share again. I really do want to share some of the new ideas that we are having to try for Billy Ray so that you, the reader, can take any piece of an idea and rework it into something that might work for your adult child.</p><p>Additionally, we have been blessed with new readers for the blogs and books. Bookie Publishing in Seoul, South Korea has translated and published my last book, Parenting an Adult with Disabilities and Special Needs. They are making wonderful strides in their part of the world and I want to encourage parents all that I can.</p><p>So, I promise not to be so quiet in the future.</p><p>Until next time,</p><p>Peggy Lou Morgan</p><p><a href="http://www.peggyloumorgan.com/">http://www.peggyloumorgan.com/</a></p><br /><p></p>Peggy Lou Morganhttp://www.blogger.com/profile/13218318064439656924noreply@blogger.com0tag:blogger.com,1999:blog-38048626.post-48715960163666144622009-10-31T15:32:00.000-07:002009-10-31T15:45:37.401-07:00Marriage Planning for Adults with Disabilities<blockquote>Adults who experience disabilities have many of the same dreams that adults without disabilities have. Marriage is one of those dreams. Unfortunately, the same dream can bring complexities that might not occur for those without disabilities.<br /><br />Based on contacts from parents since <a href="http://www.amazon.com/Parenting-Adult-Disabilities-Special-Needs/dp/0814409911/ref=ntt_at_ep_dpt_1">Parenting an Adult with Disabilities or Special Needs</a> was published I wish I had dealt with the issue in more detail.<br /><br />Finding that perfect mate brings up many issues by itself. Love, acceptance, and tolerance can be a challenge in any marriage; however, where one spouse must be able to tolerate or take on more than the average spouse it can become even more complicated. It is very awkward. Many people who don’t experience disabilities have made poor choices in spouses. Maybe things that were not obvious at marriage show up in later life and are not tolerable to one spouse. That can certainly be true for disabled adults too.<br /><br />There is also the possibility of potential spouses who want to marry someone who experiences a disability for the wrong reason. We have all heard the horror stories about people who marry someone with special needs to take advantage of them financially. Others may genuinely want to take care of the person but once married it is not what they expected. Both situations can be devastating to the person with disabilities.<br /><br />As parents, we want to protect our children and the tendency is to go to all extremes in that pursuit. Our objectivity in evaluating a proposed spouse might be compromised by our knowledge of our child’s needs. It might be harder to see the value of such a relationship to our adult children.<br /><br />It is further complicated by laws both state and federal that impact a marriage. The Social Security Administration policies do affect marriage for a person classified as “Disabled Adult Child” for their purposes (usually drawing on a disabled or deceased parent’s claim). The adult child may lose all benefits including Medicare unless he marries another “Disabled Adult Child”. Even SSI recipients who are not classified as disabled adult children may lose a substantial part of their benefits if they marry.<br /><br />I have heard of cases where a minister actually conducted a wedding and the bride and groom considered themselves “married” in the eyes of God but they were not legally married so they wouldn’t lose their benefits. I can only imagine the complications in those cases. Others have decided to marry anyway and lose benefits. The extreme poverty it brings further complicates their disabilities.<br /><br />I have often thought that if Congress would only realize that Social Security<br />policies actually end up costing taxpayers more, maybe they would look at adding some flexibility. For example, if two people receiving disability benefits marry, they will lose part or all of their benefits. Suppose both were receiving funding for in-home support staff because it would not be safe to be alone but one support staff would be adequate for both. It also might be that they could help each other more and require less paid help.<br /><br />Most states have their own laws about whether guardians can refuse a disabled person the right to marry even if it is not in their best interest. Thus, it is important to get legal advice from an attorney or advocacy center in your own area to determine how to adequately deal with the situation if it arises or, in the best-case scenario, to be prepared before it actually arises.<br /><br />Until next time,<br />Peggy Lou Morgan<br /><br />Follow me on <a href="http://twitter.com/ComplexMom">Twitter</a><br />Follow me on <a href="http://www.facebook.com/people/Peggy-Lou-Morgan/1380858416">Facebook<br /></a><br />Websites:<br /><a href="http://www.peggyloumorgan.com/">Peggy Lou Morgan.com<br />Parenting Your Complex Child<br />Lighthouse Parents </a><br /><br /><strong>Blogs:</strong><br /><a href="http://peggyloumorgan.blogspot.com/">Peggy Lou Morgan </a><br /><a href="http://parentingacomplexchild.blogspot.com/">Parenting A Complex Special Needs Child<br />Parenting an Adult with Complex Special Needs </a><br /><a href="http://www.amazon.com/Peggy-Lou-Morgan/e/B001JSDQ1C/ref=ntt_dp_epwbk_0">Amazon Blog </a><br /><br /><strong>Other Sites:<br /></strong><a href="http://www.wellsphere.com/peggy-lou-morgan-profile/98601">Wellsphere </a><br /><a href="http://www.tangle.com/lighthouseparents">Tangle (formerly GodTube)</a><br /><a href="http://peggyloumorgan.autisable.com/">Autisable</a><br /></blockquote>Peggy Lou Morganhttp://www.blogger.com/profile/13218318064439656924noreply@blogger.com0tag:blogger.com,1999:blog-38048626.post-88049348476075346922009-10-31T12:17:00.000-07:002009-10-31T12:19:18.506-07:00Technical GlitchesI have been trying to follow the publicist assistant’s advice to combine the blogs for both of my books into <a href="http://peggyloumorgan.blogspot.com/">one blog</a>. However, I have been having great difficulty figuring out how to get the feeds to various places switched. For example, Wellsphere feeds one blog to their Autism community and the other to the Down syndrome community and they can’t feed the combined blog to both communities. I thought I had it fixed for Amazon Kindle readers but apparently not.<br /><br />For now I am going to write posts of the two blogs and post both of them on the combined blog as well. Hopefully, I will get things switched at one point be down to one blog.<br /><br />Thanks for your patience with me.<br /><br />Peggy LouPeggy Lou Morganhttp://www.blogger.com/profile/13218318064439656924noreply@blogger.com0tag:blogger.com,1999:blog-38048626.post-7338992375011169872009-05-20T13:53:00.000-07:002009-05-20T14:46:11.667-07:00The Horror ContinuesIt seems the horror of abuse and even torture of children and adults who experience disabilities will never end. Just last week I blogged about the <a href="http://parentingacomplexadult.blogspot.com/2009/05/horrible-reminder-to-plan-for.html">"Fight Club"</a> Everyday there seems to be new stories. Yesterday my husband gave me a link about abuse in the public schools and <a href="http://leftbrainrightbrain.co.uk/">Kev Leitch </a>posted <a href="http://leftbrainrightbrain.co.uk/?p=2357">Autistic man tortured</a><br /><br />I don’t think that we will totally eliminate abuse against people with disabilities anymore than we will totally stop the abuse and murder of vulnerable children or others who don’t experience a disability. However, there are things that will help protect our children.<br /><br />I have often written about awareness versus what I see as true acceptance that will make a difference in the life of an individual. See <a href="http://parentingacomplexchild.blogspot.com/2007/03/awareness-that-brings-acceptance-of.html">Awareness that Brings Acceptance</a>, <a href="http://parentingacomplexchild.blogspot.com/2006/05/awareness-controversy.html">The Awareness Controversy </a>, and <a href="http://parentingacomplexchild.blogspot.com/2006/05/community-building-and-awareness.html">Community Bulding and Awareness</a>.<br /><br />I initially started what I came to call “creating a community” for Billy Ray because of difficulty we had in his acceptance in public environments such as stores and restaurants. I laughingly refer to it as creating your own Little House on the Prairie even in large metropolitan areas. You will have only so many stores, restaurants, recreational establishments, etc. that you go to with your child or adult child. That way your child and the people in those environments get to know each other better than if you go to new environments each time.<br /><br />It takes times to establish those relationships (outlined in Chapter 14, <a href="http://www.amazon.com/Parenting-Your-Complex-Child-Special-Needs/dp/0814473164/ref=pd_sim_b_2">Parenting Your Complex Child</a>) but they bring comfort and security to both your child and those in his community. Thinking about this post while we were having lunch at Billy Ray’s favorite restaurant today, I looked over at the cook and imagined if Billy Ray and a friend were having lunch there and someone harassed him. I could picture him coming out of the kitchen to intervene for Billy Ray in a heartbeat because of the affection he demonstrates for my son. The same with the clerks in our local grocery store and BiMart because he is someone they know and look out for.<br /><br />A recent interview question was about how parents can find the time to build relationships for their kids. It certainly can take time but it is vital to your child’s happiness and protection. Some of the effort can be done while you are doing things you would normally do such as grocery shopping. Building relationships with the neighbors is not only friendship for your child but they will be more likely to watch out for him.<br /><br />The more people involved in his or her life the more likely that his community of friends will be there to protect him when you can’t be.<br /><br />Until next time,<br />Peggy Lou Morgan<br /><strong>Blogs</strong>: <a href="http://parentingacomplexchild.blogspot.com/">Parenting A Complex Special Needs Child </a>, <a href="http://www.amazon.com/gp/blog/id/AHRH7YE6XOSFY/002-8813615-4460860">Amazon Author Connect </a>and <a href="http://lighthouseparents.blogspot.com/">Lighthouse Parents</a><br /><br /><strong>Websites</strong>:<br /><a href="http://www.parentingyourcomplexchild.com/">Parenting Your Complex Child</a>, <a href="http://www.lighthouseparents.com/">Lighthouse Parents</a> and <a href="http://www.peggyloumorgan.com/">Peggy Lou Morgan.com</a><br /><br />Follow me on <a href="http://twitter.com/ComplexMom">Twitter</a><br /><a href="http://www.wellsphere.com/peggy-lou-morgan-profile/98601">My Wellsphere Page</a><br /><a href="http://www.tangle.com/lighthouseparents">Lighthouse Parents on Tangle</a><br /><a href="http://groups.yahoo.com/group/parentingyourcomplexchild">Parenting Your Complex Child Yahoo Group</a>Peggy Lou Morganhttp://www.blogger.com/profile/13218318064439656924noreply@blogger.com0tag:blogger.com,1999:blog-38048626.post-19911324722045802872009-05-13T15:24:00.000-07:002009-05-13T15:39:28.000-07:00A Horrible Reminder to Plan for Protection of Your Adult ChildIn <a href="http://www.amazon.com/Parenting-Adult-Disabilities-Special-Needs/dp/0814409911/ref=sr_1_1?ie=UTF8&s=books&qid=1240879874&sr=1-1">Parenting An Adult with Disabilities</a>, I talked about assuring that support would be there for your adult child when you can’t be. It doesn’t matter what level of functioning your son or daughter is. If they are living independently in their own home or some facility, they could be abused in some way and terrified to report it.<br /><br />I walked through the living room in the middle of a piece on a Fox News program and then searched for the story on the web about the “Fight Club” at Corpus Christi (TX) State School for the Mentally Disabled. One of the commentators called it “human dog fighting”.<br /><br />Disabled residents were forced fight each other by night staff at the facility and it was filmed on cell phones. One of the alleged ringleaders apparently left his cell phone at a hospital and it was turned over to police to find the owner. Police found video of the Fight Club on the cell phone. That is how this terror was discovered. I wonder how long this whole terror for the residents had been going on and would have gone on if the phone had not been forgotten.<br /><br />According to the <a href="http://abcnews.go.com/Blotter/story?id=7556740&page=1">ABC News story </a>“One resident is seen on the video trying to run away from his attacker and a large group of employees and residents tracking him through the halls. When cornered, he wails and moans and tells the employees, "I will behave."<br /><br />This story is horrifying but is an important reminder of why it is so important to plan someone (or multiple friends) who can be trusted to stay involved and check on your adult child regularly when you can’t . Someone visiting the residents regularly would surely have seen bruises, etc.<br /><br />Until next time,<br />Peggy Lou Morgan<br /><strong>Blogs</strong>: <a href="http://www.amazon.com/gp/blog/id/AHRH7YE6XOSFY/002-8813615-4460860">Amazon Author Connect Blog</a>, <a href="http://parentingacomplexchild.blogspot.com/">Parenting A Complex Special Needs Child </a>and <a href="http://lighthouseparents.blogspot.com/">Lighthouse Parents</a><br /><strong>Websites</strong>:<br /><a href="http://www.parentingyourcomplexchild.com/">Parenting Your Complex Child</a>, <a href="http://www.lighthouseparents.com/">Lighthouse Parents</a> and <a href="http://www.peggyloumorgan.com/">Peggy Lou Morgan.com</a><br />Follow me on <a href="http://twitter.com/ComplexMom">Twitter</a><br /><a href="http://www.wellsphere.com/peggy-lou-morgan-profile/98601">My Wellsphere Page</a><br /><a href="http://www.tangle.com/lighthouseparents">Lighthouse Parents on Tangle</a><br /><a href="http://groups.yahoo.com/group/parentingyourcomplexchild">Parenting Your Complex Child Yahoo Group</a>Peggy Lou Morganhttp://www.blogger.com/profile/13218318064439656924noreply@blogger.com0tag:blogger.com,1999:blog-38048626.post-62339450464072711102009-05-07T16:22:00.000-07:002009-05-07T16:29:11.304-07:00Parenting an Adult with Disabilities or Special Needs Receives AwardI am so honored that <a href="http://www.radicalparenting.com/2009/05/07/50-best-parenting-books-for-families-with-teens-and-tweens/">Radical Parenting</a> found my book to be one of the 50 best parenting books.<br /><br />Until next time,<br /><br />Peggy Lou Morgan<br />for a complete list of my sites <a href="http://www.peggyloumorgan.com/">www.peggyloumorgan.com</a>Peggy Lou Morganhttp://www.blogger.com/profile/13218318064439656924noreply@blogger.com0tag:blogger.com,1999:blog-38048626.post-89164178984220616142009-04-23T21:09:00.000-07:002009-04-23T21:16:16.992-07:00Preserving the Parents' ExpertisePart of a question from an interview I did recently has haunted me. It suggested that some might feel transition planning was letting go in the sense of giving up on an adult. I decided to chat with you in a video blog today about that. I am pasting the video below. Depending on what feed you are reading this post on it may not come through. If not, go to my video blog page <a href="http://www.peggyloumorgan.com/VideoBlog.html">here</a> .<br /><br /><object width="425" height="344"><param name="movie" value="http://www.youtube.com/v/0xPOBPiMwfo&hl=en&fs=1"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/0xPOBPiMwfo&hl=en&fs=1" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="425" height="344"></embed></object><br /><br />Until next time,<br /><br />Peggy Lou Morgan<br />For a complete list of my sites see <a href="http://www.peggyloumorgan.com/">www.peggyloumorgan.com</a>Peggy Lou Morganhttp://www.blogger.com/profile/13218318064439656924noreply@blogger.com0tag:blogger.com,1999:blog-38048626.post-32061312071503046882009-04-06T11:36:00.000-07:002009-04-06T11:59:59.654-07:00Joe Steffy, a Success StoryThe story of Joe Steffy, who experiences the combination diagnosis of Down syndrome and Autism, is small business owner (<a href="http://www.poppinjoes.com/about_us">Poppin Joe's Kettle Korn</a>). See the full story <a href="http://news.yahoo.com/s/usnews/20090403/ts_usnews/how1autisticyoungmanrunsabusiness">here </a>.<br /><br /><br /><br />It is the classic example of what parents working with their adult child can accomplish. The parents did not believe the school district's assessment that Joe would never be able to be independent. Together they ascertained a future that would work for him, set about writing a business plan and getting a small grant.<br /><br /><br /><br />I was anxious to share these links with my readers because it will encourage us all relative to what is possible for our own children and adult children.<br /><br /><br /><br />By the way, I have just added the feed for this blog and <a href="http://parentingacomplexchild.blogspot.com/">Parenting a Complex Special Needs Child</a> to my <a href="http://www.amazon.com/gp/blog/AHRH7YE6XOSFY/ref=cm_blog_dp_artist_blog">Amazon Blog </a>so that you can read both at the same there.<br /><br /><br /><br />Until Next Time,<br /><br />Peggy Lou Morgan<br /><br />For list of sites see <a href="http://www.peggyloumorgan.com/">http://www.peggyloumorgan.com/</a>Peggy Lou Morganhttp://www.blogger.com/profile/13218318064439656924noreply@blogger.com0tag:blogger.com,1999:blog-38048626.post-58533421906121671942009-04-05T19:43:00.000-07:002009-04-05T20:10:17.339-07:00Your Adult Child's Pursuit of Happiness - Who Will DesignEveryone seems to have an opinion about what will make your son or daughter happy in adult life. Unfortunately, some of it is based on what is most prudent for programs not on person centered planning.<br /><br />Whether he is high functioning and can learn to self advocate or needs a more involved advocate he has a right to be totally involved in choosing a future that will make him happiest. You can help him on the journey to pursue what will be a happy life but he needs to be as involved in those choices as possible.<br /><br />If at all possible start taking your younger child to I.E.P.'s so she starts to learn advocating from you and to have as much understanding of oppportunities for the future as possible.<br /><br />In <a href="http://www.amazon.com/Parenting-Adult-Disabilities-Special-Needs/dp/0814409911/ref=sr_1_1?ie=UTF8&s=books&qid=1238987102&sr=1-1">Parenting an Adult with Disabilities or Special Needs</a>, I have included some exercises you could try together to help him demonstrate interest in specific plans. Hopefully, it will be helpful in jumpstarting the conversations between you.<br /><br />Until next time,<br />Peggy Lou Morgan<br />for a list of my sites see <a href="http://www.peggyloumorgan.com/">www.peggyloumorgan.com</a>Peggy Lou Morganhttp://www.blogger.com/profile/13218318064439656924noreply@blogger.com0tag:blogger.com,1999:blog-38048626.post-19685892538638381162009-02-05T15:07:00.000-08:002009-02-05T15:26:49.467-08:00If Only I Could Be More Like My Son<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-hmC1xwEhyphenhyphenXsobmpkh_3aA9cmXx2fsNiKnJFy6Q5j2oXZj_zzbkauUZS4zHdfe67Q_STxwf1kY1yox3avA_Q-a1n-mTN7BBdiYBpQMTP-JTWiS1qfEtMg9heKsd80cmuN4bAb2A/s1600-h/suit3yrs.jpg"><img id="BLOGGER_PHOTO_ID_5299458051077164242" style="FLOAT: right; MARGIN: 0px 0px 10px 10px; WIDTH: 278px; CURSOR: hand; HEIGHT: 320px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-hmC1xwEhyphenhyphenXsobmpkh_3aA9cmXx2fsNiKnJFy6Q5j2oXZj_zzbkauUZS4zHdfe67Q_STxwf1kY1yox3avA_Q-a1n-mTN7BBdiYBpQMTP-JTWiS1qfEtMg9heKsd80cmuN4bAb2A/s320/suit3yrs.jpg" border="0" /></a><br /><div>Looking at Billy Ray, now 26 years old, this morning I was thinking if only I could be more like him. He is full of life and dressed in slacks, white western shirt, and blue sport coat wanting me to help him with his belt and tie. That’s been his favorite attire since this little picture at 3 years old. On the other hand, my attire this morning consisted of a warm bathrobe, slippers.<br /><br />Everyday is an adventure from the time he arises in the morning until his eyes finally close at night. While I am trying to get my acid reflux meds down and survive until I can have coffee to get my eyes working to do his blood sugar test and read my email, Billy Ray is raring to begin his day. If only I was more like my son.<br /><br />I love the piece by Dr. Dennis McGuire of the Adult Down Syndrome Center in Park Ridge, Illinois, called If People with Down ’s syndrome Ruled the World. Things would surely be different if that were the case. Take a look at it <a href="http://www.nads.org/pages_new/news/ruletheworld.html">here</a> – hopefully it will give you a chuckle and a better understanding of people who experience Down’s.<br /><br />Until next time,<br /><br />Peggy Lou Morgan<br />For a complete list of my sites <a href="http://www.peggyloumorgan.com/">http://www.peggyloumorgan.com/</a> </div>Peggy Lou Morganhttp://www.blogger.com/profile/13218318064439656924noreply@blogger.com0tag:blogger.com,1999:blog-38048626.post-948697563310685122009-01-05T15:24:00.000-08:002009-01-05T15:42:55.984-08:00Don't Worry, Be HappyI was struggling with what to title this post. Technically, I had written some of what this post covers in a <a href="http://parentingacomplexadult.blogspot.com/2008/12/planning-for-and-protecting-your-child.html">prior post</a>; however, there have been lots of news about program cuts, etc. and I felt like I needed to post again. The title I might of used sounded like the prior post. This title kept coming to mind. Can't remember if it was a song or a commercial but I remember it was a slogan from a few years ago.<br /><br /><br />In his recent program Geraldo Rivera called “The Waiting List”, Geraldo at least twice mentioned that he has been hearing folks talk about returning to institutionalizing people with disabilities. In a video on his Fox News website Geraldo talks about why he made this program and he also provides clips from his famous expose` on the Willowbrook. You can view that video by <a href="http://www.foxnews.com/video/index.html?playerId=videolandingpage&streamingFormat=FLASH&referralObject=3358233&referralPlaylistId=playlist">clicking here</a>.<br /><br />I know that news and talk about budget cuts is scary. The anxiety of “the nagging question” of what happens to our children when we are gone is why I wrote <a href="http://www.amazon.com/Parenting-Adult-Disabilities-Special-Needs/dp/0814409911/ref=sr_1_2?ie=UTF8&s=books&qid=1231194729&sr=1-2">Parenting an Adult with Disabilities or Special Needs</a>. With the concerns expressed by Geraldo and others we need to be proactive in terms of having people who will understand your adult child’s needs and be strong advocates when your voice is less available to your adult child.<br /><br />There are things you can do in the meantime to protect your adult child. Instead of being stuck in anxiety over what might happen to your child, expend that energy on planning for him.<br /><br />Some adults with disabilities are high enough functioning they could live independently but still need someone to check in occasionally. Generally, that service is provided by semi-independent living programs. If funding for those services were cut you could easily have a backup from your church or circle of friends. Instead of worrying about what might happen, think about who could provide a piece of what your child needs. It is amazing how much relief comes from being proactive rather than worrying.<br /><br />Until next time,<br />Peggy Lou Morgan<br />Author of <a href="http://www.amazon.com/gp/product/0814473164/qid=1135283486/sr=1-1/ref=sr_1_1/102-9297016-1547329?s=books&v=glance&n=283155">Parenting Your Complex Child (AMACOM Books 2006)</a> and<br /><a href="http://www.amazon.com/Parenting-Adult-Disabilities-Special-Needs/dp/0814409911/ref=sr_1_2?ie=UTF8&s=books&qid=1231194729&sr=1-2">Parenting an Adult with Disabilities or Special Needs (AMACOM Books January 2009)</a><br /><a href="http://www.peggyloumorgan.com/">http://www.peggyloumorgan.com/</a> for a complete list of websites and blogsPeggy Lou Morganhttp://www.blogger.com/profile/13218318064439656924noreply@blogger.com1tag:blogger.com,1999:blog-38048626.post-56312195674236997562008-12-03T11:02:00.000-08:002008-12-03T11:13:46.937-08:00Planning for and Protecting Your Child or Adult Child Who Experiences Disabilities or Special NeedsI have been thinking about planning for and protecting my son, Billy Ray, even more lately because of my recent health problems while I was writing my second book. The stress of the present economic situation adds to the concern. Budget cuts are threatened in many areas. That adds another dimension to “that nagging question” (what will happen to my child when I can’t be there for him). Funding for programs that are working for him may be cut, facilities and homes may close due to economic constraints. Even a more independent adult child may have difficulty getting the things he needs in bad economic times. I find myself wondering what if this economic downturn happened after I can’t change planning.<br /><br />We are not the same close knit society portrayed in programs like Little House on the Prairie and other television programs or movies. Neighbors were there for neighbors and could be counted on to care for children if something happened to their parents. Families are more mobile and lead busier lives so they are not always close. We have learned to depend on the government rather than each other. As we explore what the government will really be able to do it gets scary.<br /><br />Sometimes there is great resentment on the part of some taxpayers about spending money for special education and other programs for people with disabilities even when times were not as difficult as they are presently. I believe that is because so many of our children are never really known as individuals with strengths and weaknesses like everyone. The more community awareness is improved the more accepting society is of the need for programs and other assistance.<br /><br />Community awareness that actually brings change is that which helps our children to actually be known and understood to become a part of the community and have others involved in their lives and vice versa. As our children are known and understood protests about their need for programs and other adaptations are reduced. Sometimes it is the community needs who needs training as I wrote <a href="http://parentingacomplexchild.blogspot.com/2008/08/who-needs-training-children-or-adults.html">here</a>.<br /><br />It would be easy to become paralyzed with fear for our children. There is peace in knowing that you have done everything you can do to assure a happy and secure life for him or her. In my new book, <a href="http://www.amazon.com/Parenting-Adult-Disabilities-Special-Needs/dp/0814409911/ref=sr_1_2?ie=UTF8&s=books&qid=1228329530&sr=1-2">Parenting an Adult with Disabilities or Special Needs</a> and in future blog posts and video blog, we can share the journey together to protect our children or adult children. There are so many things that we can do such as:<br /><br />· Assuring that he or she has friends who will stay involved.<br />· If appropriate, training her to be a self advocate.<br />· Having various people involved in her life who will maintain different roles.<br />· Maintaining her “story” so that she can share her memories and history with new people and old friends.<br />· Appropriate estate planning documents.<br /><br />That is only a few ideas but it sounds like it will take a lot of energy. Worrying about your child’s future takes a lot of energy too but the peace that comes from planning for and protecting your child is revitalizing and reassuring.<br /><br />Until next time,<br />Peggy Lou Morgan<br />For a complete list of my websites and blogs see <a href="http://www.peggyloumorgan.com/">www.peggyloumorgan.com</a>Peggy Lou Morganhttp://www.blogger.com/profile/13218318064439656924noreply@blogger.com1tag:blogger.com,1999:blog-38048626.post-38723749943951375472008-05-01T09:41:00.001-07:002008-05-01T10:07:55.526-07:00Frightening RealitiesAs shared previously I experienced a minor heart attack on New Years Eve. I am recovering slowly but the biggest issue has been getting and keeping my blood pressure stable.<br /><br />There is nothing like a wake up call like I experienced to make you rethink everything about planning for a child or adult child with special needs. I will share more about that in my upcoming book Parenting An Adult with Disabilities or Special Needs which will be out in January 2008. I did want to share what happened yesterday.<br /><br />As stated I am getting better everyday but somehow I am still a little nervous about being alone with Billy Ray for extended periods of time. I based that on the fact that I was feeling fine, watching the New Year celebration in New York on television when my husband when to bed at 11 p.m. Then at midnight the episode came out of the blue and I headed to the hospital in an ambulance. Thus, I feel pressure to have plenty of backup planning.<br /><br />My husband is going to his daughter's graduation from college soon. It is about 3 hours away and he will will gone for two days. Friends of ours are going to be on call incase we need some help. They are true friends for Billy Ray but don't feel comfortable taking care of him for long periods of time.<br /><br />Yesterday, I called the case manager to ask if I could give our friends his cell phone number the weekend my husband was going to be gone so that in the event of an emergency they could call him. It was my assumption that if something happened there would be "crisis beds" where Billy Ray could be placed temporarily in adult foster care until Larry got home or I was able to take care of Billy Ray again. He informed me that it would do no good to give the cell phone number to our friends. If something happened on the weekend or at night the police are to be called. They would pick Billy Ray up and put him in an adult nursing home.<br /><br />That would be devastating to Billy Ray on multiple levels. First of all he freaks if a uniformed officer comes to the house. Once we had a "malicious child abuse complaint". An officer in uniform and a protective services worker came to the house. While the complaint was determined unfounded it still did damage to Billy Ray for a long tme. He thought that he was a "bad boy" and was going to jail. For years he and his deceased Dad had watched the television show Cops because it started out in our then city. The theme song "Bad Boys" has stuck in his head. Thus he believed he was going to jail and didn't understand the risk of being removed from me. He was frightened by that prospect for months afterward.<br /><br />Secondly, a nursing home would not work for him even for a very short period because he requires one to one attention and would wander around. Additionally, his noise when he is confusion would like impact other residents.<br /><br />That potential is very frightening. It means hastenng consideration of transition planning even if we can't get the most ideal situation for him. At least he would not have the risk of the above.<br /><br />Until next time,<br />Peggy Lou Morgan<br />For a complete list of links to my other blogs and websites go to <a href="http://www.peggyloumorgan.com/">www.peggyloumorgan.com</a>Peggy Lou Morganhttp://www.blogger.com/profile/13218318064439656924noreply@blogger.com1tag:blogger.com,1999:blog-38048626.post-86450533004876714442008-01-07T08:31:00.000-08:002008-01-07T08:38:45.690-08:00That Nagging Question ReappearsI have been working on my new book about transition planning. One of the chapters is titled That Nagging Question (what happens to my adult child after I'm gone?)<br /><br />On New's Year Eve I started having breathing problems and had a horrifying ambulance ride. Needless to say no matter how prepared I thought I was that nagging question haunted me all night. They think I had a small heart attack and may have some blockage. As a result, I have been thinking more things through and making notes which I will share with you here as I can and in my new book.<br /><br />At noon today I have a stress test and another test tomorrow. I will try to post how we are doing on my <a href="http://lighthouseparents.blogspot.com/">Lighthouse Parents Blog</a>. If I end up having surgery my pastor is going to post on that blog to keep folks updated on how we are doing.<br /><br />Until next time,<br />Peggy Lou Morgan<br />For a complete list of my sites go to <a href="http://www.peggyloumorgan.com/">www.peggyloumorgan.com</a>Peggy Lou Morganhttp://www.blogger.com/profile/13218318064439656924noreply@blogger.com0tag:blogger.com,1999:blog-38048626.post-88626001407711111112007-11-09T10:20:00.000-08:002007-11-09T10:50:34.269-08:00We're Still Here 11/09/07<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhP6HGTRfgN5Gk6K4g79m5GwGE7NRQl15L8MPGbA6yD1OTWy7OQLDipgsdSXUWFf5pZT1jWaIaoXIGBYcXVU7E6_JOdXSZ08CaYAuJ0lchVmX4g_D5bnZ9dhniHbTCnOu_3yeR6TQ/s1600-h/BRElora.11.03.07.jpg"><img id="BLOGGER_PHOTO_ID_5130908285023975522" style="FLOAT: right; MARGIN: 0px 0px 10px 10px; WIDTH: 272px; CURSOR: hand; HEIGHT: 320px" height="320" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhP6HGTRfgN5Gk6K4g79m5GwGE7NRQl15L8MPGbA6yD1OTWy7OQLDipgsdSXUWFf5pZT1jWaIaoXIGBYcXVU7E6_JOdXSZ08CaYAuJ0lchVmX4g_D5bnZ9dhniHbTCnOu_3yeR6TQ/s320/BRElora.11.03.07.jpg" width="320" border="0" /></a> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0oQxPXKAS5qYQFPZ1M7ejICqZ3s5cePG__LiFIL2-bVrZT1Q4oqlseQIFPw3Gyupp8EvR0N0LY3d2u1p-s_53M5doTvjt7BK2fdWyCRgJSgQMydD2JPp-iWijEntGfXPdtx89TA/s1600-h/EloraBRmakingpunch.jpg"><img id="BLOGGER_PHOTO_ID_5130907988671232082" style="CURSOR: hand" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0oQxPXKAS5qYQFPZ1M7ejICqZ3s5cePG__LiFIL2-bVrZT1Q4oqlseQIFPw3Gyupp8EvR0N0LY3d2u1p-s_53M5doTvjt7BK2fdWyCRgJSgQMydD2JPp-iWijEntGfXPdtx89TA/s320/EloraBRmakingpunch.jpg" border="0" /></a><br /><div><br />While it may not seem obvious, because I haven't posted for a while, I am working on support for parents of adults with special needs. AMACOM Books has given me the go-ahead on a new book, tentatively titled The Never Empty Nest, which deals with adults. More to come on that later.</div><div> </div><div>In my last post I talked about the importance of having someone to "hold the story". I mentioned one of my step-granddaughters who seems to have a close relationship to Billy Ray. Again, I want to say that he has good relationships with others in the family but this one just seems a natural. Elora is also older.</div><div> </div><div>Elora was here for a long weekend so I got a chance to talk with her about my thinking that she would hold Billy Ray's story and what that would mean. She loved the idea and I thought showed great understanding of it. I noted that she involved Billy Ray in activities even more than usual. He is very responsive to her and it works well. Above are two pictures of them making ice cream punch together.</div><div> </div><div>I am working on an article about teaching younger kids and adults to simplify housekeeping tasks using products like Swiffer. I will post a link here when it is on my website.<br /></div><div>Until next time,<br />Peggy Lou Morgan<br /><strong>Blogs: </strong><a href="http://www.amazon.com/gp/blog/id/AHRH7YE6XOSFY/002-8813615-4460860">Amazon Author Connect</a>, <a href="http://parentingacomplexchild.blogspot.com/">Parenting a Complex Special Needs Child</a> and <a href="http://lighthouseparents.blogspot.com/">Lighthouse Parents<br /></a><strong>Websites:</strong> <a href="http://www.parentingyourcomplexchild.com/">Parenting Your Complex Child</a>, <a href="http://www.lighthouseparents.com/">Lighthouse Parents</a> and <a href="http://www.peggyloumorgan.com/">Peggy Lou Morgan.com</a><br /><a href="http://www.clubmom.com/display/219475?expertId=1266">Club Mom Articles</a><br /><a href="http://groups.yahoo.com/group/parentingyourcomplexchild">Parenting Your Complex Child Yahoo Group</a></div><div></div>Peggy Lou Morganhttp://www.blogger.com/profile/13218318064439656924noreply@blogger.com0tag:blogger.com,1999:blog-38048626.post-33373496369345954212007-03-26T11:03:00.000-07:002007-03-26T12:38:07.293-07:00Establishing Relationships That Last for Your Adult Child When You Can't Be ThereYou may have noticed I haven’t written much since starting this blog. To be honest, I am struggling a bit trying to decide what to put on this blog and what to put on <a href="http://parentingacomplexchild.blogspot.com">Parenting a Complex Special Needs Child</a>. My big thing has always been preparing for adulthood and I have written about it extensively. However, sometimes you have to start where you are. Thus, today’s blog.<br /><br />As parents we expect to around to be a support when our adult children go into an apartment or program. We may not be able to do that. I have a whole chapter on estate planning in <a href="http://www.amazon.com/gp/product/0814473164/ref=pd_rvi_gw_1/103-9655353-6276615?%5Fencoding=UTF8&v=glance&n=283155">my book </a>because I often became guardian or trustee after the parent had died or became too ill to advise in the care and planning for their adult child. I created a form for medical and development history, visuals and documents about the routine and care required for my son so they are available to someone in the event I am no longer able to communicate his needs to the appropriate person.<br /><br />However, last summer I had the privilege of sitting in several of Dr. David Pitonyak’s sessions at a conference where I was speaking. It gave me real pause to take another look at planning. Dr. Pitonyak kindly puts the <a href="http://www.dimagine.com/page5.html">handouts for his various presentations on his website</a>. You will find them great reading.<br /><br />One of the things that hit me hardest was Dr. Pitonyak’s statement “Imagine if the only relationships you had were people who were paid to be with you?”<br /><br />I don’t mean to imply that every family who has a member with disabilities is isolated; however, many are. Some marriages become real teams and others fall apart when confronted with parenting a child with special needs. Long-term friendships are hard to maintain with the responsibilities we carry. Depending on your child’s situation it may seem overwhelming to go out in the community so isolation becomes the norm.<br /><br />If your adult child is in a group home or some kind of facility it would be easy to say he or she has plenty of friendships among staff or fellow residents. In <a href="http://www.dimagine.com/The%20Importance%20of%20Belonging.pdf">The Importance of Belonging</a>, Dr. Pitonyak says: “Although paid staff can be friendly and supportive, they frequently change jobs or take on new responsibilities. The resulting instability can be devastating to someone who is fundamentally alone.”<br /><br />Fellow residents may also be short-term or your adult child may be moved to another placement. These relationships are not necessarily enduring.<br /><br />Friendships for your child or adult child can be established in much the same way you develop friendships. You meet someone with similar interests or background. If he or she loves to bowl spend time at the bowling alley. Other people there doing what they love get used to see you and your child there. Comfort level usually increases and sometimes relationships ensue. Whatever he likes to do spend time in a regular setting that enables him to do what he loves and to meet others with that same interest.<br /><br />Some relationships may come from within one’s family. An example for Billy Ray is one of his “neeses” (nieces). He has good relationships with many of his step-nieces and nephews. One is especially close – if I am talking to this step-granddaughter on the phone and she hears Billy Ray in the background she will say “is that Uncle Billy Ray? Let me talk to him, it will help.” It does help calm him to talk to her in person or on the phone. I have noticed that he interacts with her more than with most people. You can tell he makes an effort to do that because she is important to him.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8HzfMjUJujCdE9s8wyHuo_VyA_0A4qE1zAtgy4i5b1z_2pRP6N_hyphenhyphenSWPl77pKek2yHTA8LDZHSz_5k1eJrFdXKcIM0VW1aSvEdMhb4-fhFV9tx8J7v5C7aZ2GllX6lmxBbNaVyg/s1600-h/MeriBRCoda.jpg"><img id="BLOGGER_PHOTO_ID_5046302330075457170" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; CURSOR: hand" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8HzfMjUJujCdE9s8wyHuo_VyA_0A4qE1zAtgy4i5b1z_2pRP6N_hyphenhyphenSWPl77pKek2yHTA8LDZHSz_5k1eJrFdXKcIM0VW1aSvEdMhb4-fhFV9tx8J7v5C7aZ2GllX6lmxBbNaVyg/s320/MeriBRCoda.jpg" border="0" /></a>I was reminded of the importance of common ground in relationships recently when we spent a weekend visiting at my brother and sister-in-law’s house. My brother remarried a few years ago but we haven’t had a lot of opportunity to get to know his wife, Meri. She is a social worker so responses to Billy Ray were probably more natural than they might be for some. However, besides being very good with my son, they clearly shared a mutual interest in dogs. The picture shows Meri sharing her dog with Billy Ray.<br /><br />Dr. Pitonyak also talks about the importance of having someone who holds a person’s “story”. I plan to write on that in another post. However, I wanted to say that having relationships that endure after parent(s) are no longer available, especially if that person understands what life was with parents and really knows a person is vital to their security and happiness.<br /><br />Until next time,<br />Peggy Lou Morgan<br /><strong>Blogs</strong>: <a href="http://www.amazon.com/gp/blog/id/AHRH7YE6XOSFY/002-8813615-4460860">Amazon Author Connect</a>, <a href="http://parentingacomplexchild.blogspot.com">Parenting A Complex Special Needs Child </a>and <a href="http://lighthouseparents.blogspot.com">Lighthouse Parents </a><br /><strong>Websites</strong>: <a href="http://www.parentingyourcomplexchild.com">Parenting Your Complex Child</a>, <a href="http://www.lighthouseparents.com">Lighthouse Parents </a>and <a href="http://www.peggyloumorgan.com">Peggy Lou Morgan.com</a><br /><a href="http://www.clubmom.com/display/219475?expertId=1266">Club Mom Articles </a><br /><a href="http://groups.yahoo.com/group/parentingyourcomplexchild">Parenting Your Complex Child Yahoo Group</a>Peggy Lou Morganhttp://www.blogger.com/profile/13218318064439656924noreply@blogger.com0tag:blogger.com,1999:blog-38048626.post-26566218476987260692007-01-16T11:29:00.000-08:002007-01-16T11:54:58.006-08:00Share Your Adult Placement Success StoriesA comment on the <a href="http://parentingacomplexadult.blogspot.com/2006/12/what-empty-nest.html">last post </a>must have been reading my mind. I have gotten several email from parents who say that their adult child’s group home are very caring and try very hard. I have also gotten email with horror stories. I admit that I can be a little bias on out of home placements. I was just thinking to request your success stories so we were fair and balanced, as they say.<br /><br />The success of placements seem to have to do with not only the competence of the facility but the ability of the complex adult to tolerate a group type setting. Billy Ray has been in two different settings that didn’t work. I have been wanting to share that experience but don’t want to imply that all placements result in horror stories. So as the commenter on the prior post asks let’s hear about some success stories. You can either <a href="mailto:peggy@lighthouseparents.com">email</a> with them and I will post with or without your name (let me know which you wish) or you can leave them as comments to this post.<br /><br />Until next time,<br />Peggy Lou Morgan<br />Blogs: <a href="http://www.amazon.com/gp/blog/id/AHRH7YE6XOSFY/002-8813615-4460860">Amazon Author Connect</a>, <a href="http://parentingacomplexchild.blogspot.com">Parenting a Complex Special Needs Child </a>and <a href="http://lighthouseparents.blogspot.com">Lighthouse Parents</a><br />Websites: <a href="http://www.parentingyourcomplexchild.com">Parenting Your Complex Child </a>and <a href="http://www.lighthouseparents.com">Lighthouse Parents</a><br /><a href="http://www.clubmom.com/display/219475?expertId=1266">Club Mom Articles</a><br /><a href="http://groups.yahoo.com/group/parentingyourcomplexchild">Parenting Your Complex Child Yahoo Group</a>Peggy Lou Morganhttp://www.blogger.com/profile/13218318064439656924noreply@blogger.com0tag:blogger.com,1999:blog-38048626.post-1166109864134486002006-12-14T07:17:00.000-08:002006-12-14T07:44:04.576-08:00What Empty Nest<a href="http://photos1.blogger.com/x/blogger/7601/1720/1600/855591/BasketBall1.jpg"><img style="FLOAT: left; MARGIN: 0px 10px 10px 0px; CURSOR: hand" alt="" src="http://photos1.blogger.com/x/blogger/7601/1720/320/103062/BasketBall1.jpg" border="0" /></a> It seems only yesterday that Billy Ray came to us as a bouncing, bubbly 15 months old. Next week he will 24 years old. The "nest" as they say is not empty by any means. He still needs as much daily care and advocating as he did as a child. He still can't be left alone.<br /><br />In my blog, <a href="http://parentingacomplexchild.blogspot.com">Parenting a Complex Special Needs Child</a>, we talk about children and many issues apply to adults too. However, it seems important to separate them now as we transition in adulthood. You may want to check out that blog as well because there may be helpful things for your situation and you can see how we got to this point.<br /><br />It is my hope that we as parents of adults with special needs can chat about our experiences and support each other in this exciting and difficult time. Please do comment and share how your experiences differ from Billy Ray's and mine. That is not only interesting to me but may help other parents at this juncture in the journey with their adult child.<br /><br />Not all adults can function within existing systems for adult support. Some can function great in assisted living programs, others can live independently or in group homes and still others will not tolerate a group living situation. Whatever the situation there are challenges that we as parents must assist with. In addition, there is the giantic question about what happens when we as parents are no longer able to assist our adult child.<br /><br />Let's share our journeys and be a support to each other along the way.<br /><br />Until next time,<br />Peggy Lou Morgan<br />Blogs: <a href="http://www.amazon.com/gp/blog/id/AHRH7YE6XOSFY/002-8813615-4460860">Amazon Author Connect</a>, <a href="http://parentingacomplexchild.blogspot.com">Parenting a Complex Special Needs Child </a>and <a href="http://lighthouseparents.blogspot.com">Lighthouse Parents</a><br />Websites: <a href="http://www.parentingyourcomplexchild.com">Parenting Your Complex Child </a>and <a href="http://www.lighthouseparents.com">Lighthouse Parents</a><br /><a href="http://www.clubmom.com/display/219475?expertId=1266">Club Mom Articles</a><br /><a href="http://groups.yahoo.com/group/parentingyourcomplexchild">Parenting Your Complex Child Yahoo Group</a>Peggy Lou Morganhttp://www.blogger.com/profile/13218318064439656924noreply@blogger.com5