tag:blogger.com,1999:blog-72129327018006734552024-03-08T07:58:52.760-06:00Hollie, Angie and JohnMy stories of living with two siblings that have Down Syndrome.Holliehttp://www.blogger.com/profile/05641789266856027000noreply@blogger.comBlogger39125tag:blogger.com,1999:blog-7212932701800673455.post-85258130573752253602011-07-12T13:42:00.000-05:002011-07-12T13:42:01.423-05:00Bad SisterLife has really been boring for Angie and John lately so I've had nothing to write about! John's been rock solid on the no-hospitalization goal we had. At the home he lives in, they've added tools like an oxygen sensor to keep close tabs on him when he does get sick. Overall though, he's just been good. We don't see him often enough but the last time we did, he was happy and healthy.<br />
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The major change for them in the past year has been age. Both Angie and John have started to need Depends more because of incontinence. Nothing else dramatically seems different.Holliehttp://www.blogger.com/profile/05641789266856027000noreply@blogger.com0tag:blogger.com,1999:blog-7212932701800673455.post-36350995270325240882011-06-15T08:28:00.000-05:002011-06-15T08:28:14.038-05:00Long lost updateIt's been awhile since I posted. Partially because i've been using Livejournal for so many years that it takes awhile to switch services. But the key point now is that Livejournal is blocked from work and Blogger is not!Holliehttp://www.blogger.com/profile/05641789266856027000noreply@blogger.com0tag:blogger.com,1999:blog-7212932701800673455.post-39569174164966440822010-08-07T16:20:00.002-05:002010-08-07T16:56:36.482-05:00My favorite SisterShe's my only sister of course but after all this time I can't imagine having a better sister. She is hysterical and generous and lovely. She makes me laugh even when I want to cry.Holliehttp://www.blogger.com/profile/05641789266856027000noreply@blogger.com0tag:blogger.com,1999:blog-7212932701800673455.post-19888112027986822842010-07-25T20:38:00.002-05:002010-07-25T20:45:54.956-05:00Unemployment, Moving and possibilities...I'm still in the midst of a lot of major changes. I went through an overdose of anti-anxiety pills which led to taking those completely out of the equation and learning about addiction. Because I was unable to work, I am now unemployed but receiving benefits. I came back from Gatecon with a newly inspired joy that I'd somehow lost. I've lived many different places in my life and over time, I've lost that dreamy quality and replaced it with the words of my family who, through the best of intentions, have always thought I was a bit strange for having such aspirations. <br /><br />I'm not unhappy but I'm also missing something. I haven't moved in over a year and I've been in Wisconsin since 1999. I want to change that but I want to be sane about it. Leaving my family isn't something I'd do lightly. Though I am proud of where we've ended up. My sister would probably not be as deeply ingrained in our lives as she is if I hadn't impulsively pulled her out of a home to live with me 6 years ago. <br /><br />The future is uncertain. I'm probably going to a convention in Atlanta in September almost entirely because people I've met elsewhere have been incredibly supportive. I'm literally at the bottom of the financial ladder but that's ok. It gives me time to plan, time to write, time to dream and then I can take flight. <br /><br />No matter where I go, Angie and John will be in my heart.Holliehttp://www.blogger.com/profile/05641789266856027000noreply@blogger.com1tag:blogger.com,1999:blog-7212932701800673455.post-35526836928160097632010-07-13T16:09:00.002-05:002010-07-13T16:20:44.656-05:00July and GateconIn the months since my last post:<br /><br />John went into the hospital again (for the 6th time) and his blunt but kind doctor explained the process of morphine given to someone dying to me. It was painful to hear but doesn't change our decision. I will not have him suffer, I will not let him be tied down to keep him alive nor let them feed him through a tube. It sounds small but to John, eating is a Joy, one of the truly few he has control over and I will not take that from him. But, he got sick quickly and recovered quickly so all is well. <br /><br />Angie is completely acting out more (yay yay yay) and her caretakers at school are being a little too helpless about it. She's growing and pushing her boundaries. She's developmentally delayed - she won't stop - you have to keep adapting and the fact that she's pushing those boundaries means she's Living! When I say acting out, I mean that she's not standing there and letting people be really loud in her face or touch her if she's not comfortable - she does what she right now knows how to do - pushes them away or 'smacks' their arm or leg (not hit but open hand with light force.) yes, she has to find another way to do it but she's non-verbal so it is a challenge. <br /><br />Mom is out of work until August for her knee surgery and her workplace is treating her with such disrespect that it makes me ill. But she has ideas and there is light on the horizon.<br /><br />I'm out until Monday with my own short term leave. I just got back from an amazing convention. Last month I also stopped drinking and went off some medication so lots of medical/psychological adaptations for me which is why i was off work. This month has had me completely inside my head thinking about my life and where to go with it. To have met the people I met this last weekend - both actors and convention goers - at this time in my life is priceless, timeless, special, spiritual and amazing all in one. <br /><br />I also have a small shout out to this site: http://ibelieveshesamazing.com/ - I just became aware of it and I'm completely on board.Holliehttp://www.blogger.com/profile/05641789266856027000noreply@blogger.com1tag:blogger.com,1999:blog-7212932701800673455.post-47972383026884249022010-04-12T22:48:00.002-05:002010-04-12T22:59:31.732-05:00ScriptfrenzyI like to write. I have a talent for it but like any talent, it takes practice. I'd like to get serious about it now. One way I've been doing that is by entering contests, paid and unpaid. One of them is a screenwriting challenge (i've never written a screen play) for 100 pages in a month. I'm 3 pages away from 50 and I have no idea where the other fifty are going to come from. I thought about starting a second short play but really, the big story I have to tell is my own. I find talking about it in the third person helps give me perspective as to what is interesting to look at not just read.<br /><br />I also bought a book called writer's market. It comes with an online addition that lets me search for types of articles to write and magazines to submit them to. First of all, I need a collection of work. Books, articles, Essays - non fiction opinion, research etc. <br /><br />My blogs have helped keep my writing skill honed but its time to ante up. <br /><br />Aside from my own little world, John has been sick again with pneumonia. I'm nervous and scared like any sister. Its made worse by his inability to really tell us 'i'm feeling congested or really tired' - the only sign is sleeping late and being unable to move without help. They caught it early and he was only in ICU 4 days before going home. They sent him home with O2 but we can only put it on him at night. He did come home for Easter. He was his annoying little self so you know he's feeling better. <br /><br />I think he gets away with more because he's ill and ill a lot and he knows he's treated differently. He's on a lot of meds to handle his behaviors and at the home he lives at, there's a nice time out room - a sunroom with his cd player for him to chill out without being overstimulated. <br /><br />The hard part of this bout with pneumonia was the doctor saying his lungs are severely damaged. there will be a time when we don't catch it and he'll not wake up. Not saying it'll happen tomorrow or this year or in five years just..it is likely to happen. Facing mortality - always hard.<br /><br />Mom and I and John and Angie will be buried together or all of us cremated at the same plot. Time will tell. <br /><br />I do want to write my book about Angie and John. Maybe a short story for a website would be a good start. I think there's a serious need for research on alternatives for adults with disabilities in the different regions. A comparison if there isn't one already. But that's a huge project. I wonder if I could at least get a handout from each state. Maybe one of the Down Syndrome websites has or an interest in it.Holliehttp://www.blogger.com/profile/05641789266856027000noreply@blogger.com1tag:blogger.com,1999:blog-7212932701800673455.post-40012454528325910232010-02-19T11:05:00.002-06:002010-02-19T11:09:21.727-06:00ShortyPlease watch this movie: http://bit.ly/9NHMwp<br /><br />Its about a man who is 56 and lives with his brother. His father was involved in the local school athletics program and Shorty (Walter) became part of the routine. Water boy, towel man, coach etc.. The documentary follows him around. Some times he sounds like a normal mundane man but his attitude and his loyalty are inspiring. You can see in the people that talk about him - strong strapping young lads playing football, old coaches, his brother, his nieces and nephews - how much he adds to their lives in ways they just never thought about.<br /><br />Its available on Amazon. The significance of his age is that the average down syndrome adult dies in their mid 50's (ie 55) so being 56 is statistically significant.Holliehttp://www.blogger.com/profile/05641789266856027000noreply@blogger.com0tag:blogger.com,1999:blog-7212932701800673455.post-49917738296508975322010-02-17T23:46:00.002-06:002010-02-17T23:55:43.583-06:00Rambling..I tend to ramble and I hate editing. Makes it kind of hard to imagine me ever finishing any of my books. I did my autobiography in I think 1394 words a few months ago and I need to go back and edit it. Trying to be concise when my life is anything but is like stufffing Hulk Hogan into Twiggy. <br /><br />This story of Angie and John is something I'm passionate about. There are blogs and books about little kids with autism and Down Syndrome. They are cute and cuddly. But adults - not so much. They are still so beautiful though. Like when you walk out of work on a freezing December night and the sky is that perfect midnight blue. They catch you by surprise. <br /><br />One minute you're convinced your brother is devilspawn and the next his giggle dazzles you and you have tears welling up from deep inside because you didn't know he was still there.<br /><br />It is absolutely crazy hard some days. But others, its effortless. My sister opens the door for the dogs so I don't have to get up and she claps with joy because I asked her to do something and she succeeded. She hugs me tight before she literally prances to bed and my mom and I sit in the living room, tears of laughter covering our face because she keeps turning the light on in her bedroom and the bathroom, going back and forth, drinking water from the faucet and murmuring to herself in her own language.<br /><br />How do I take these conflicted, complicated human beings and bring them to life so people who have never touched or seen or been with someone with a disability can FEEL the beauty and joy that emanates from them and surrounds you?Holliehttp://www.blogger.com/profile/05641789266856027000noreply@blogger.com0tag:blogger.com,1999:blog-7212932701800673455.post-61103800598319282852010-02-09T00:29:00.002-06:002010-02-09T00:41:15.247-06:00Introduction #2I'll caveat this by saying that I don't have regrets. I would not have wanted anything or anyone to be other than they were because I believe we have all come through our challenges as better, stronger, more loving and generous people. <br /><br />This is not to say that I have never wished for a moment that my situation was different. To be forever responsible for your siblings - to have that responsibility drive your life choices is hard. It does give me purpose and the sense of being needed. There's no worry that my sister will move across country without me. There is worry that should I decide to ever go anywhere else, that I couldn't take her with me. That would be like losing a limb to me. I'm not fond of the town I live in. I much prefer Milwaukee, Madison or even Chicago. But this is where Angie, John and my mom are so this is where I am.<br /><br />My sister in her worst moments smacks the dog, shouts in frustration and throws away papers we really wish she wouldn't throw away. My brother in his worst moments shits the bed, pinches so hard you get bruises and will nag you like a 3 year old for constant attention even if it means throwing the computer in your lap to the floor. <br /><br />This is not fluffy bunny fun. I don't have any other siblings. I have cousins I am close to who have kids. But I won't have nieces or nephews, brother in laws or sister in laws. There's no one but me to take care of my mom and my siblings in their old age.<br /><br />I deal with snotty caseworkers, brilliant doctors, stupid doctors and caring caseworkers. I know my siblings better than most but I always have to convince their new caretakers that I do before they listen. I'm a co-parent with my mom for my siblings and have been as long as I can remember.<br /><br />To give me a chance at a different life, my mom placed Angie and John in a boarding school knowing she couldn't give them the best care when I was away. John has never been the same. Angie was different for a long time and she has come around after living at home and is a combination of our 'old Angie' and a grown up Angie. John seems more damaged and fragile. I carry that guilt - even knowing it was the right choice. <br /><br />Being a parent or a sibling isn't easy for anyone. Each experience is unique. I cherish mine but the realist in me has to remember that sugar coating it makes the triumphs a little less sweet.Holliehttp://www.blogger.com/profile/05641789266856027000noreply@blogger.com1tag:blogger.com,1999:blog-7212932701800673455.post-58611900146012512512010-01-29T23:59:00.002-06:002010-01-30T00:29:06.163-06:00Its January 2010I am way behind in updating this lovely blog. I am completely flabbergasted that its been a month since Christmas. Work has been incredibly busy and stressful for me. So from the top...<br /><br />...me: I'm really good. I tried a few Tae Kwan Do classes and settled on one that meets Tuesday/Wednesday/Thursday nights. I play Volleyball on Wednesdays but I can go on T/Th. I'm the lowest belt/newest person but I really like how TKD feels. I watch the others and the control they have over their body, the breathing, the flexibility and the whole attitude is amazing. Great, great energy. So I'm going to not worry about how bad I am or how long it takes me to learn something. I'm just going to keep going. The people there are really nice too and maybe I'll stumble onto a bit of a social life. Who knows? Work is kind of the same way - good people, but I'm much busier there so not sure on the social life implications.<br /><br />...Angie: She's been having a bit of a rough time because I've been busy. We're very close and always have been. When I'm busy and drained, I tend to get a little grumpier at home and less focused on her. The big challenge is that Angie doesn't talk so she can't come up to me and say "listen, I know you're busy but PAY ATTENTION TO ME!" Instead, if I walk by her and she's upset with me, she'll smack my leg. This month that I've been working, getting home late, playing volleyball late or at TKD class, I just haven't been here for her. I do make a point of greeting her - a touch on the shoulder, a hug, making eye contact but its a change she has to adjust to. They have noticed a change in her at the Day Program as well. They suggested medication right away which really annoys me. She's been in this Day Program off/on for years. But with turnover, I know her caretakers/group leaders always change. They contacted my mom and I gave my suggestions to mom but she wanted me to talk to them myself since I express myself a little more eloquently. The Day Program contact refused to talk to me about Angie unless my mom was with me because I wasn't her guardian.<br /><br />Excuse my language but What The Fuck? I pick my sister up, I drop her off, everyone knows who I am and when you see us together its VERY clear how important I am to Angie. Not to mention, my mom talks about my relationship with Angie all the time and her caseworkers and county nurse talk to me as well. This 'fresh out of school' brat needs to grow up and be professional. If she's really 'worried' then she just needs mom to sign a release. But I don't think that is it. Back in September when John was in the hospital again, Angie missed her bus and I had to pick her up. It was a stressful time for all of us and them making that kind of mistake was ill-timed. It wouldn't have been that big a deal for me except I was a) at the hospital with John and he can't really be left alone and b) a week before, the day program threw a hissy fit and called Angie's caseworker because my mom wouldn't leave work to pick Angie up at 1pm in the afternoon because they thought she had contagious ringworm on her head. For clarification, she gets on the bus to go home at 2:30pm. Their response to my mom was incredibly rude, insensitive and implied she was somehow a bad parent. So lets just say, a very agitated Hollie walked into the two people's office who called the caseworker and asked if she should call the caseworker on them? I definitely was not calm but they are supposed to be professionals and be able to deal with it. However, I'm pretty sure that's why they don't want to 'meet with me without my mom' because last time I yelled at them. Again, I say, suck it up and do what's best for Angie.<br /><br />Anyway, since the latest communication happened by email, I replied to my mom and this woman who has a really odd last name with the clarification that if I can take my sister to the doctor and have her treated, then I'm pretty sure there's room in the law for me to tell her how to deal with Angie's hitting. (I said it nicer and I forwarded my reply to Angie's caseworker.) Like I said above, you need to be aware of Angie because she doesn't know how to politely ask for attention. If she's agitated by something (someone making loud noises or in her face) she's going to act out. While this is uncomfortable and inconvenient, its also a sign that she knows she has a right to protect herself and express herself. Redirecting is hard to do but it can be done verbally. The best action is to be proactive. Greet her in a way that she knows you notice her. Don't just say "hi angie", touch her lightly on the shoulder or wave to her and make good eye contact so she knows you see her. If she is acting agitated, give her either extra attention or give her time alone. If she hits, give her a time out but remind her to be gentle - possibly demonstrate a 'soft touch' to get someone's attention. <br /><br />Hopefully they will listen and now that work is settling in for me, I can do my part at home to keep her calmer at school. The system kind of sucks sometimes though.<br /><br />and last but not least...<br /><br />...John: He's feeling better, just like at Christmas. He's firmly settled into his new digs and is up to most of his old tricks. Obsessing about food, pulling hair and pinching. They move him when he acts out to show that he's done something inappropriate and then redirect him by turning on his music or turning on the tv (depending on where he acted out.) His diet is still pureed but if it keeps him from inhaling food and getting gross stuff in his lungs, then I guess its the best thing for him. He went to the dentist for sedation (or is going soon) and we should be able to get a hip xray. He had surgery on them 20 years ago and we have no real idea how they are doing. There's a possible glitch in his medical record though because it says he has MRSA. I thought he did at one time and told a nurse that but then the doctor told me he did NOT have MRSA. So Monday mom has to play with the medical records people and try to figure it out. I'm not sure they can test for it unless he's actual sick and can give a mucous sample. <br /><br />Life sounds so interesting, huh? Well in our own little world it is. Family time is precious though I spend a decent chunk of my time alone writing or playing on the internet. I spend a lot of time trying to figure out my sister but that's not really work - its just very fascinating. She continues to delight and amaze me. John still continues to try my patience. I love him very much; however he's fragile in mind and body and it takes far more patience to reach him. Mom is doing her best as well. Glad she has all the paperwork for money and legal signatures. Someday that will be all mine and that day can definitely wait!<br /><br />Laterz.Holliehttp://www.blogger.com/profile/05641789266856027000noreply@blogger.com0tag:blogger.com,1999:blog-7212932701800673455.post-21263991684341201122009-12-27T10:46:00.002-06:002009-12-27T11:04:38.596-06:00ChristmasWhat a December. Most of it was spent with me dealing with possible employment. In the middle of the month, the employment was acquired and I'm very thrilled though very busy. There's an odd connection to my employment and my dad though and its karmic I think. Cosmic resonance? I'm not sure.<br /><br />I work in the technical support industry so I'm often utilized at companies where I'm not an actual employee but a contracter. The headquarters for my company is in Indianapolis, where my dad lived for quite a few years before he passed away. When I trained for three days for my new job, I flew down to Indy. The actual site that I work at is in Green Bay and before my dad moved onto government work, he was a security guard at the building I work in. And there are people there who remember him. Knowing he walked those halls is strangely comforting especially this time of year. I've been a bit of a grouch about Christmas for awhile now and getting a job just in time for Christmas put me in a better mood. <br /><br />Christmas Eve I worked until 1 and then picked up my brother. My work is only a mile away from both John's group home and Angie's day program. John was really good, mostly happy and kind of tired. He dozed on the couch for a couple hours before I woke him up to go to the bathroom and have dinner. Mom fed him dinner and another bathroom break, then his meds with ice cream. <br /><br />Angie isn't always thrilled when John comes home but we balanced it fairly well Christmas eve and both kids were happy. The next morning was a little more challenging.<br /><br />John had diarrhea and my poor mom had to clean it up from his bed, to the couch, through the kitchen and to the bathroom. Then he was mostly good for the morning but as long as he could see food from Noon on, he was just obsessed and frustrated. His other acting out in the morning was to pull out my sister's crayon/pen box and toss them all over the floor. Of course my sister wasn't impressed when she had to pick them up!<br /><br />I woke up a little later and we did have a pretty decent Christmas. Really about 80% was good. I sing the song 'Bicycle Built For Two' to John and it seems to make him laugh/calm him down. Then I tickled my sister Angie and brought her mood back up. By 2:00pm though, John was getting more irritated and the weather was getting more unpredictable so I took him back to the group home around 3:00pm. Of course, not before he wet the couch. <br /><br />When I took him back, I talked to one of his caretakers and they mentioned that he'd been more aggressive about pulling hair (ie he's feeling better and not sick) and also that they notice the obsession with food. Also that they need to do bathroom tries every 2 hours because he's just not letting anyone know he has to go. Part of it is his medication, I know. But its hard knowing there was a time when he was fully potty trained. No night or day accidents. We'll have to try and come up with ideas to deal with the aggressiveness and the potty issues. But, he's still overall pretty happy and is apparently doing very well at his Day Program.<br /><br />Angie was glad to see John go home and to have me spend the rest of the day with her plus most of Saturday with her. She's been a little put out because I've been gone or exhausted with the new job and not giving her very much attention.<br /><br />So that's life in our little world. Day by day.Holliehttp://www.blogger.com/profile/05641789266856027000noreply@blogger.com1tag:blogger.com,1999:blog-7212932701800673455.post-88879500711448007562009-11-28T12:00:00.002-06:002009-11-28T12:08:46.400-06:00ThanksgivingIts been a little crazy lately but that's typical for us. Our Thanksgiving went the way it usually goes. We spend the day together - Mom, Angie, John and me. Mom cooks, Angie sits as far away from John as she can, John eats, and eats, and eats and I try to mediate. <br /><br />John was really good for about two-three hours but as soon as he saw food on the table that's all he wanted. So the last couple hours he was really frustrating because he kept wanting to go into the kitchen and the man is strong.<br /><br />I did pick him up and take him back and he was almost perfect in the car. He loves music playing in the car. I also brought Betsy, my dog with me, on the ride back and she made some new friends in John's group home.<br /><br />I'm thankful this year but still preoccupied with not having a job. Angie is feeling better after being sick for a few days. I just programmed the DVR so Mom can watch her Christmas shows.Holliehttp://www.blogger.com/profile/05641789266856027000noreply@blogger.com1tag:blogger.com,1999:blog-7212932701800673455.post-82558536912384201412009-11-22T08:05:00.002-06:002009-11-22T08:35:35.063-06:00November and all its cracked up to be (part II)on a meandering path through weddings and families, reconciliations and reaffirmations, and finally an exclamation point. October 10th saw the marriage of one cousin, on my mother's side, a young woman who lost both parents in the last decade. She's in her twenties and her parents were in their fifties. I don't socialize with most of that side of the family - not quite hatfield and mccoys but the drama of daily life. But the wedding was nice and my sister clapped when she shouldn't have - it was cute. The reception meant I had to dodge and encounter the uncle I despise most but otherwise I survived and as Fr. Tim would say, I had to leave the door open so people could walk through. <br /><br />Six days later, there was a wedding on the other side of family. While I normally refer to myself as their version of hellspawn, I'll clarify that my stepmother had something to do with their attitudes toward me and now that she's gone back to Indiana and my father is dead, that side of the family has reverted to small town practicality. I'm his oldest daughter, he could be a real jerk, my mother raised me and two handicapped siblings oh and his so called loving second wife pretty took him for all or what little he had. Which doesn't bother me - I don't care about that kind of money but others do, plus they shunned me because of what she told them so they are a little peeved. Like I mentioned before, the door was open, I walked through it, they walked through it and my status as hellspawn as been reduced to somewhat erratic but invited to family events. Most importantly, they let down their grudge against my mother which means I'm not caught in the middle anymore.<br /><br />The final wedding of Oct/Nov was the most important. Yes, I am VERY biased. Renee is the one pictured with me, Angie and John and she's like a younger sister but more. There are people you would do anything for and she is one of the reasons I'm home - she's 'grounded me' but in a good way. Her wedding was the most fun and I talked to my cousins more that night than I had in years. Her wedding was a bridge between families since her husband knows everyone. It was an amazing night. <br /><br />Finally, drained but eager to get out of dodge I headed east for one of my adventures - a sci-fi convention. I love to travel outside my comfort zone and Gareth David Lloyd from Torchwood and John deLancie from everything else was going to be there. Leonard Nimoy was in the building but he wasn't worth the $60 dollars I didn't think I had. Of course, the best laid plans...<br /><br />I hooked up with three other solo con attendees who were all there for different people and we wandered about together, particularly at dinner and breakfast where we sat with the celebrities. My group sat with Corin Nemec (look him up - short version, he's tall and hot). We had a blast. He was charming, funny and extremely easy to talk to. Granted, I've been unemployed for three months, spent far too much time in hospitals, physical and psychological therapy and in really annoyingly uncomfortable interviews but given all of that, it was easily the highlight of the convention. My brain was fairly unfiltered - by nervousness, xanax or not eating enough but I laughed, joked, teased and probably embarassed myself though, I don't care. Its that feeling of freedom when for a moment in time, you're just you, with a tablefull of strangers, listening and contributing and it all feels like this amazing human connection. While I did have a glass of wine or two, I was far more intoxicated by the human interaction buzz. <br /><br />The rest of the convention had its moments - a picture with Corin giving me a hug and signing it 'Cuddles are for Winners' - trite or not, its not a bad motto. <br /><br />The universe is an amazing and complicated thing. It hasn't ever been easy and its not meant to be but when it gives back these little glimmers of hope. Reconciliation, freedom to speak freely, a charming man that made me feel accepted - all of that is a message. And before I signoff, be brave and go where you may not have gone before. We know the twisted life we lead as brothers, sisters, mothers, fathers, caregivers and managers of adults with developmental disabilities. We need humor to get through our day and its not always perfect humor. I find this web series refreshing - satirical, raunchy, certainly not for the faint of heart but on those darkest days when you need a laugh, check it out.<br /><br />http://www.crackle.com/c/Star-vingHolliehttp://www.blogger.com/profile/05641789266856027000noreply@blogger.com0tag:blogger.com,1999:blog-7212932701800673455.post-65131852793702163502009-11-22T07:47:00.002-06:002009-11-22T08:03:58.950-06:00November and all its cracked up to beJohn. Oh what can I say about John. He's currently apparently not sick. Woohoo!<br /><br />However, he's not 'better' either. He keeps spiking fevers and there continues to be miscommunication between doctors and nurses and caregivers - oh my! Theoretically, should he show signs of congestion again and he's in the right hospital, the pulmonologist (lung specialist) that he's supposed to see is going to rush in and save the day. <br /><br />If only.<br /><br />However, everyone is fairly well aware finally that hey, maybe this isn't freaking normal even if he has 'Down Syndrome'. There are days, when I really get frustrated with my brother, usually after he's pulled my hair and left claw marks on my chest but that's nothing compared to these doctors who don't respect that he is loving, living, beautiful person and treat him like an afterthought. That attitude is going to hasten his demise and while most people don't see my temper, its fairly pronounced when you threaten someone I love.<br /><br />So the last ER visit turned out to be a false alarm but if protocols had been followed, the extra special wonder doctor would have been called and could at least have evaluated John. It hasn't been long enough for the pneumonia scars to heal but he could get a sort of baseline (and also understand why I stay in the hospital with him since he's difficult.) I get tired of explaining to nurse after nurse after doctor after doctor that "He's 18 months old living in a 31 year old body, if you want to poke and prod him, he'll be fine but if you try to put an O2 monitor on him or O2 in his nose/face, he'll fight."<br /><br />I'm scared because this antibiotic-sick-antibiotic-sick-stronger antibiotic-sick sequence just can't go on forever. People have suggested g-tubes, thinking he's silently aspirating. Imagine a man-child who LOVES to eat, not being able to. I don't even know if they could keep a g-tube in. They can't keep a CPaP on him unles his meds have him drugged out. <br /><br />And physically holding him down for treatments isn't fun for him or for those who have to do it. And the worst part is, very few people get it. Even I didn't for awhile. You lull yourself into wondering why is this all happening. He's mentally, physically and behaviorally sick - how much value does his life have?<br /><br />But I grew up with him. I remember the joy, I still feel the enduring, unconditional love, I see the smile when I sing "a Bicycle built for two'. He is in there and when I mean he, I mean whatever was meant when someone said the meek shall inherit the earth. I'm as untrusting of most things written down thousands of years ago with double and triple meanings. But I see my brother, the weakest of us all, and my family is pretty messed up. He has something about him that glows. Not all the time. He drives me crazy some days. But when I reach him, for those moments, I believe in something. I remember the race we're in only matters sometimes. We all suffer in our own ways. Maybe this is John's final journey but I won't let him face it without a fight. <br /><br />He is my brother, my baby brother and there are answers yet to be found.Holliehttp://www.blogger.com/profile/05641789266856027000noreply@blogger.com0tag:blogger.com,1999:blog-7212932701800673455.post-85853975245645030762009-11-02T23:27:00.002-06:002009-11-02T23:39:38.630-06:00Where oh where did October go?So many changes in the last month. I may ramble a bit but I should cover everything. First John was discharged from the hospital and I am pretty sure everyone knows how I feel about that. Short version: there are still no answers except 'he keeps getting sick and we'll keep treating him with antibiotics'. Of course the underlying issue is that at some point, the antibiotics won't work. That scares me as it would anyone facing the mortality of a loved one. But one day at a time. He has a doctor appt tomorrow. He also starts his new Day Program tomorrow. Mom and I both giggled when we saw the ad in the paper for a one-to-one person needed at his new Day Program. As I've mentioned before, John can be challenging so she/he will be in for a challenge.<br /><br />In sadder news, the woman who managed John's group home was laid off. I feel this blow deeply because I feel like we've lost someone we trusted who was on John's side. This economy frankly keeps kicking us all while we're down. But on we march.<br /><br />Angie has been much like her namesake this month. At both weddings she was an Angel - completely delighting everyone she met. I'm so proud of her and of my family both those who have helped integrate her and those who were open to really seeing her for the first time. It really validated my decision to bring her out of the CBRF she was in 5 years ago. Of course it hasn't been an easy journey but to see her fitting in was awesome. We have one more wedding this weekend - the 'big' one and I'll be attending to the bride who is my cousin so Mom will be Angie's chaperone.<br /><br />Mom and I have both been able to visit John more since he moved and when he's not in the hospital. One of the challenges with John is wondering if he notices when we aren't there. While the hospital stays weren't fun, they helped me connect with John on a different level and that has made visiting him easier. <br /><br />I've been job hunting and its been three months now. It hasn't been going all that well. I've been trying to do some soul searching as well and I've come back to the idea of being a teacher, specificially a special education teacher. I've applied to a program. There are lots of hoops to jump through and while its a recurring theme in my life (this rethinking of my career), its still a big change. Patience though and prayer/meditation.Holliehttp://www.blogger.com/profile/05641789266856027000noreply@blogger.com0tag:blogger.com,1999:blog-7212932701800673455.post-19788306837921471542009-09-27T01:15:00.002-05:002009-09-27T01:39:22.606-05:00So fucking tired (excuse my language)I'm sure that there's some message from the Divine in all of this. My faith is muddled but I've lived too long with my beautiful siblings to not have a belief in a higher power. <br /><br />Facing mortality is hard. I've lost my father, an uncle and an aunt. I know my siblings won't live to an old age but lately I've had my brother's mortality thrown down in front of me like a gauntlet. Maybe raging against the inevitable. But i just do not believe that the only answer to my brother getting sick is aspiration and Down Syndrome. <br /><br />I know a lot of people don't see the blessing my siblings are. Sometimes I don't see it. But when the moments come, when the tiniest action of your brother holding your hand or your sister brushing your hair, they come with a beauty that is brilliant. <br /><br />They aren't broken. Nothing needs to be fixed. They just are who they are and helping them achieve their potential is as much their gift to us as it is our gift to them. <br /><br />I know the day will come when they will get sick. Too sick to hope for them to get better totally. But I just don't think its now. And I don't have to give up quite so easily. I'll figure something out.<br /><br />In the meantime, there is something I've been thinking about: http://larcheusa.org/Holliehttp://www.blogger.com/profile/05641789266856027000noreply@blogger.com0tag:blogger.com,1999:blog-7212932701800673455.post-83256276306025476162009-09-26T09:00:00.003-05:002009-09-26T09:30:37.014-05:00A Family of StrangersLet me preface this by saying I'm sitting in the hospital at 9AM and I have been here since Tuesday at 9:40/10:00am. My brother, who has been treated with a strong antibiotic because of pneumonia and a fever four times beginning in April of this year, was brought to the ER because his fever spiked to 102 and that's been our experience of the first sign he's getting sick. and since he's been really good at getting sick lately, his group home manager rightly brought him to the ER to be evaluated. They put him on a broad spectrum antibiotic and his fever went down. Then they admitted him. I was assured that 'this time' we'd figure out what was going on. Well that didn't happen.<br /><br />He is being discharged today with a 14 day course of two antibiotics, one that he's had before and responded to and a new one recommended by the infectious disease doctor. His doctor came in today to follow up on what he had told me last night.<br /><br />John has Down Syndrome and his body ages faster because of the translocation of the genes. John is getting pneumonia because he's aspirating. Even though I have concerns about his mouth/swallowing muscles atrophying if he eats pureed food all the time, a)i'm not a doctor and b)i'm not a speec therapist so I should just accept that they know more than me and he needs pureed food with sips of liquid basically forever. Also, while he didnt' get pneumonia this time and the culture didn't grow anything, I should accept that he has Down Syndrome and that he won't be around forever and 'this kind of thing just happens because things change with people.'<br /><br />We played a few word games when I explained my sister is older and doesn't have these issues, although John is different behaviorally and he jumped on that to explain that first I was telling him they were alike but now I was telling him they were different. He also suggested that I should visit someplace like Children's hospital where they treat more patients with Down Syndrome.<br /><br />In a lovely recommendation for the empathy of said doctor, he praised my 'advocacy' for John and when I blurted out 'what else do you expect me to do, not care?' he asked - well what would you do if there were no John.<br /><br />I think it was at that point that I agreed to respectfully disagree and he said 'you are a smart lady and we're just talking.'<br /><br />The manager of John's group home also talked to this doctor and arranged the discharge for the time we'd mentioned and she/the home have his antibiotics already. But per the doctor, John could spike a fever at any time because 'that's his life now'. What a life.<br /><br />The case manager here at the hospital has been in to see me twice - once while we talked about John's experiences last time and once to give me a copy of paperwork I already had.<br /><br />John's group home attendants have come up three times with clothing and to check on us so they've heard my point of view.<br /><br />The nurses have all been good, particularly the ones that had John before. He is ready to go home. At 11'ish last night while I left the room to get an ice cream bar, he got out of bed, alarm and all and walked down the hallway in his diaper. I switched him to shorts, let him sit up in a chair for a half hour and then ushered him back to bed. I have fresh scrapes, bruises and scars.<br /><br />I'm his sister and I love him. I get told how awesome that is but while I appreciate the compliment, seriously what other choice is there? I love him and I've spent half my life taking care of my brother and sister. But that too was thrown in my face by the doctor 'what would you do without john'? Well, as a matter of fact, I was married, I brought my sister to live with me, then I divorced and then I moved to milwaukee and then I came home because John and family needed me here and I was lonely. What options are there when you love your brother and he needs you?<br /><br />The hardest thing for me is the lack of control in all of this. Medicaid caseworkers. People sitting in his group home talking to his county worker about his health. People making decisions about what kind of food he should eat. Doctors deciding his problems are just 'normal' for Down Syndrome patients. State and Federal Government who would rather pay strangers, well meaning and organized, trained strangers, more than my mother and my monthly salary combined to take care of John even though if they paid half that amount to my mom or I, we could take care of him at home and it could be a full-time job for us but life doesn't work that way. And then comments about money - what the nurses make by the same people who make 9x what mom and I made to take care of him. But its not really income the powers that be say. It was just his social security and a little bit set aside by the state. Does ANYONE wonder why families can't take care of their disabled children at home?<br /><br />So we give ourselves up to being part of this Family of strangers who in many ways have more power than your own blood. Doctors and lawyers, nurses, caregivers, house managers and caseworkers. In the end, I think I end up feeling as powerless as John must feel.<br /><br />But we must all get along because its the best its going to get for John.Holliehttp://www.blogger.com/profile/05641789266856027000noreply@blogger.com0tag:blogger.com,1999:blog-7212932701800673455.post-31364975869166648982009-09-02T07:07:00.006-05:002009-09-02T22:28:11.703-05:00Hollie's bookMy family has had a complicated life. <br /><br />I have had a complicated life.<br /><br />The challenges of a dairy farm, broken marriages (mom's and mine) and extended family misunderstandings were barriers that we've had to deal with. Overcoming wasn't and couldn't be the goal because family is blood and you always have them. Only time gives us perspective on the past.<br /><br />I'm writing a book and at first I was trying to write just my story but I honestly cannot talk about myself without talking about Angie and John. We are bonded together. A bond of little gestures, challenging moments, goofy outbursts, tears of frustration and joy of reunion.<br /><br />I've been feeding my brother for as long as I can remember. We used to run around the house while he chased me. I held him when he had his anger seizures. My sister has been my anchor - she's learned how to help me by putting dishes in the sink, laundry in the basket and now even getting soda from the refrigerator. She plays with my hair and dances with goofy abandon. <br /><br />When I was 17, I was starting my senior year in college. All of my life had wound around family, caring for my siblings and the responsibilities of the farm. When my dad's heart attack coincided with giving over the farm to other members of the family, mom looked at the big picture and chose a place for Angie and John to go. I have no doubt it was the best place for them.<br /><br />St. Coletta's was run by an order of sisters that I'll have to look up again but they are unofficially known as the Lake Franciscans from Milwaukee. Its in Jefferson Wisconsin and its three hours away. Rosemary Kennedy was there though in a separate house. It was a school setting like dorm rooms. John and Angie had had six week 'camping' trips there for a year or two until the year they went there full time.<br /><br />I have said many times that because John requires more care, due to division of labor, Mommy took primary care of John and Angie was mine. But I still played with my little brother. He'd chase me around the house. He'd giggle at the silliest things. He'd love to watch football. He'd roll balls around. My sister - well how do you explain feeling 'complete' when you just sit in the same room with someone?<br /><br />It was the best thing for our family. I had to strike out on my own, have a life, figure out who I was - not just an older sister, the oldest daughter but everything else. What kind of music would I like. What kind of job would I have. Who would be my first real friends. College was waiting. Life was waiting for me and my mom and my brother and sister all made that sacrifice to give me a chance at living my life as Hollie - not just Hollie, Angie and John.<br /><br />So I had my life - I got drunk, I wrote blogs, I dated, I figured out it took me 10 years to finish college and six years to go from married to divorced. I met new friends and made new enemies. I started to really grow up. Now I'm home again and living with one sibling and spending time with the other because he's in a group home close to where I live. This is not what I expected when I left home. But I wasn't the only one of us who changed and grew.<br /><br />St. Colettas was a wonderful school; my sister even had first communion. But my sibs were 14 and 15 when they moved out. We were all split up - Mom and Dad stayed in Wisconsin until Dad got a job in Nebraska. I was in Seattle, North Carolina and then DC. Angie was at Colettas for several years until she aged out of the program and moved home into a CBRF. John also aged out and went to a different kind of institution.<br /><br />Their journeys were different. We touched base every few months and the small changes became big changes. But our journeys have come around to a new height. <br /><br />My sister now makes her bed better than I do but when she plays with my hair, all my stresses melt. My brother struggles with behavioral issues and when he's not pinching me, I tickle him and his giggle gives me tingles in my heart.<br /><br />My sister now livess with my mom and I. My brother lived with us after his first bout with pneumonia until he moved out into a group home.<br /><br />There are so many stories there. Who were they when they were younger? How have they changed? Why? What happened to them when they were away from home? What happened to me? Yet we spent every thanksgiving, christmas and Easter together. Each reunion was bittersweet - it was rare that we were all together and until 2004, good byes meant taking everyone home to different places.<br /><br />There's more and I'll stop rambling now but that's our story. Complicated. Crazy. Compassionate. Challenging. <br /><br />But its my life and even as I sit in the hospital with my brother, a few bruises on my arm because he had a bad day yesterday, I feel loved, tired and special. I miss my sister - I wish she was here to tussle my hair and dance with me and John. I'm not married, I don't have a job right now and I'm still happier than I've ever been because my brother and sister are an integral part of my life.Holliehttp://www.blogger.com/profile/05641789266856027000noreply@blogger.com0tag:blogger.com,1999:blog-7212932701800673455.post-86512557667919500012009-08-31T14:41:00.002-05:002009-08-31T14:53:15.312-05:00John and PneumoniaFor the fourth time in five months, John has pneumonia. He's in the hospital and the doctors are concerned. I don't understand all the medical terms but the pneumonia is in both lungs, its viral but is staph(spelling on that) which confuses me - is that infection bacterial on top of the viral or is it a viral version of staph and if so, how do antibiotics help? Or are the antibiotics for the other symptoms? I'll ask again tomorrow when I see the doctor.<br /><br />I met on a more intimate basis two of John's caretakers at his new home and I'm impressed. The house manager came to check on him and the caretaker watched him while I ran an errand. They are genuinely are interested in treating him as a family member, as the person he is and the person he can become. <br /><br />He's sleeping now, relatively peacefully. He occasionally wakes and is very obnoxious which is a hint he's feeling better. But he's still so tired.<br /><br />His lungs are chronically scarred. Each bout with pneumonia is another life threatening encounter. However, we are aware and we are watching, all of us. We're family.Holliehttp://www.blogger.com/profile/05641789266856027000noreply@blogger.com0tag:blogger.com,1999:blog-7212932701800673455.post-30979881941466537502009-08-21T07:04:00.002-05:002009-08-21T07:11:37.620-05:00TemporarynessThis blog is about all of us - me, my sister and my brother. <br /><br />I need a little more perspective though before I can write about the last month with any clarity. So let me write with extreme emotion.<br /><br />I moved home in May after my brother almost died in April. There really was no question in my mind what the right thing to do was - family trumps work any day. Especially when its a case of life and death.<br /><br />Obviously he's survived and thrived. In fact he almost killed us! Well not exactly but it felt like it in the middle of June when he was fighting pneumonia and channelling the antichrist!<br /><br />By mid July my mom and I and family moved him into a group home of four people plus 1-2 staff members at all times. He's doing well and everyone is adjusting.<br /><br />I stopped to take a breath and then on August 7th I lost my job. Since I was technically 'discharged/fired', I have to wait 21 days for my unemployment to kick in. There was no gross misconduct - I just have to wait.<br /><br />I'm job hunting. I'm spending a lot of time researching freelance writing. I'm moving towards practicing writing more than just blog entries. Until then, keep me in your thoughts and remember that with every door that closes, there's a window that gets broken open from the door slam ;)Holliehttp://www.blogger.com/profile/05641789266856027000noreply@blogger.com0tag:blogger.com,1999:blog-7212932701800673455.post-78784270064687538812009-07-30T11:48:00.002-05:002009-07-30T12:20:19.810-05:00Potential - griefJohn has a new home away from home. He was placed on Tuesday after school. I took the day off, did his laundry, folded his clothes and stayed home with my sister Angie while Mom and my aunt Barb took him to his new home. They made pizza for him for supper. His room is a bright green and the house is balanced with two male and two female clients. Its five blocks from his new day program (the same Day Program my sister goes to) and he'll go from 9am-Noon. They have their own van to transport them. Which is important because when John has fits, he pinches and he's gotten kicked off busses before. He also tends to sleep at his afternoon day program so it doesn't pay for him to go if he's just going to sleep.<br /><br />This is a good thing. I am emotionally and logically aware that it is a good thing. He's placed. He's in Green Bay. It will not be hard to visit him, even just for a few hours and an ice cream.<br /><br />I purposefully haven't gone to settle him in because Mom needs to process this first before I can. Its just the way my family works. Once she gets through the worst of her rough feelings then I can fall into mine.<br /><br />Last night mom went out with a friend and came home late. I was wound up for some reason. Maybe it was staring at the futon frame. (we removed the mattress because it had been semi-piss soaked) That's where John has slept for the last few weeks. I couldn't hear him snoring. I couldn't kiss the top of his forehead. <br /><br />I had relief earlier in the evening when he normally would have been pulling at me, throwing things etc and I could just read, hug Angie good night and listen to tv in the background. But as it got later and the house got emptier, things felt heavier. I took my xanax and finally fell asleep around 3:30am after mom came home and we watched an episode of Doctor Who.<br /><br />This morning I overslept and didnt' want to get out of bed. What I really want to do is go home, crawl into bed and just sleep away the guilt, the loss, the failed hopes.<br /><br />Emotionally, I tend to intellectualize my feelings. I grieve for a lot of things right now. My dad's birthday was July 28. Its a year anniversary to when I decided to up and move to be with Larry and his kids (a relationship that ended in spectacular disaster) and of course John. He's beautiful and I love him. I'm glad that he is somewhere else so I can go back to being sister and not being the disciplinarian and being angry at him all the time.<br /><br />I wanted and hoped for ways to help us help John. To find a way to help him get better. Admitting one's limitations is not easy. I've found it takes a lot of tears to wash away just a little of the self-pity and guilt. But life and love goes on.Holliehttp://www.blogger.com/profile/05641789266856027000noreply@blogger.com0tag:blogger.com,1999:blog-7212932701800673455.post-58247365496850096622009-07-28T22:39:00.001-05:002009-07-28T22:42:41.224-05:00John John John.My sweet but unconrollable little brother. I don't know his official diagnosis but along with Down Syndrome, he's being treated for depression, anxiety, seizures and anti social behaviors. Pinching and such. Its kind of hard to explain but he'll get up, throw things, wander around, finding more flat surfaces with stuff on it and throw those things too. I have no better way to describe it except as some kind of fit or tantrum. You can't legally give him a timeout because he doesn't have the cognitive level to 'get' why he's in the wrong. <br /><br />But we've had some good times while he's been home. Its been lovely to see his smile, to be with him when he's not pinching or striking out. To see him calm and happy. Its a blessing. <br /><br />He is in a new group home tonight. Its in Green Bay and just a few blocks fro the day program my sister goes to (which is probably where he will end up.) My mom and aunt took him to the new place. I stayed home with my sister. Its complicated to explain but basically we're all emotional over this and I wanted to keep a clear head. In a few days I think I will let it sink in. <br /><br />It is harder for my mom. I think its hard for all mothers. My sister is more 'mine' and yet she's 'easier' and I had backup. John was always hard but we had hope. <br /><br />We're grieving the potential but there is more a sense of relief. We were going absolutly nuts. Constantly agitated. That will change now. <br /><br />Love you John. always.Holliehttp://www.blogger.com/profile/05641789266856027000noreply@blogger.com0tag:blogger.com,1999:blog-7212932701800673455.post-48373458961744009872009-07-22T10:20:00.002-05:002009-07-22T10:46:34.654-05:00The other shoe dropping slowly...My brother has been 'assessed' a few times for placement. Of course its not 'pass/fail' but because we have a twisted sense of humor, my family tend to get pretty good at reading people and when they react to John a certain way, we're pretty sure he 'failed'.<br /><br />He is challenging to say the least. What he needs is a somewhat firm direction and correction combined with some calming tones. But he reacts very much like a 'kid' - the nicer you are, the more he'll take advantage and since that 'advantage' often involves pinching, you tend to have to be fairly firm more often than not.<br /><br />It is tiring being a disciplinarian though. Its not a role I enjoy playing every day. One of the many reasons I want my brother to be placed in a new home. Then I'd get to go back to what I really enjoy - being a sister.<br /><br />The downside is that finding a new placement is difficult, kind of like finding a new job. Plus, finding the 'right' one isn't going to happen quickly and he needs to be placed sooner than later for our sanity. So we'll 'hop' a bit, while we try to find the best fit. It won't and cannot be perfect.<br /><br />However, when you first go through the assessment process and then look at the house possibilities, the theories of what you want to happen clash harshly with the realities. An old house, a questionable neighborhood, people you don't know who will soon have to be taking care of your loved one - there's no simple way to deal with that shock. Even when you prepare yourself for it.Holliehttp://www.blogger.com/profile/05641789266856027000noreply@blogger.com0tag:blogger.com,1999:blog-7212932701800673455.post-30253336271740373382009-07-20T00:06:00.002-05:002009-07-20T00:39:14.827-05:00JohnnieI think I've mentioned that our main issue in caring for him is the 5pm to midnight shift. He is obsessed with 'za' as in pizza/food. He'll wake out of a total sleep sometimes for 'za' which I think substitutes for comfort/attention.<br /><br />One of the things that I found when Angie first came out of an institution was that she didn't want to hug anymore. That's a huge thing - 1. because Down Syndrome love physical touch and hugs and 2. she was uncomfortable. There's an issue when you do care especially for adults who have developmental disabilities - appropriate and inappropriate touch. I've run into it when Angie has had a day program put 'appropriate touch' into her IEP because I and my ex-husband encouraged her to hug us goodnight. We firmly believed (and were proven right) that in being able to hug again, she was able to trust, open up and grow further as a whole human being. However, the particular day program she was in, was concerned about her hugging strangers. It wasn't so much that she initiated the hug but that if someone moved in a certain way (particularly when saying goodbye) she would react the way my husband and I had 'taught' her and do a 'half hug' rather than a handshake. They wanted her to be able to differentiate between handshakes and hugs - she's mentally not quite able to do that. To redirect her, we suggested things like stepping back (non verbal signals) and high fives or even a hand bump. We went through that process for a few months and then I witnessed a staff member give a non verbal 'signal' to say goodnight to Angie that indicated to her that it was 'hug time' and the staff member told angie that that was inappropriate.<br /><br />Just to clarify - my sister is nonverbal. She doesn't speak or use sign language unless prompted. However, she is very good at body language. For instance if you ask her something she can very clearly respond with a "yes" or "no". Yes is actually pretty funny - its usually a smile accompanied by a head bob and using both hands to sign a mix of Yes and No - two fingers crossed over the thumb - I believe the two fingers over the thumb is no and a fist bobbed down is yes. So she uses both her hands, with her finger over her thumb and simultaneously moves them in an up/down motion with a smile and a head bob for "Yes". For no, she turn her entire upper body including shoulders to one side about 45 degrees, her face will tense up and she'll throw her hands out in the opposite direction, all five fingers splayed open.<br /><br />Therefore, its very clear if she wants or does not want to do something. That being said she is generally very easy going. If she's cranky she'll be less coopertive, have a tendency to smack with her hand the dog or person walking by her and if she's in trouble she will actually make a yell with her vocal cords; the reasons are generally easily deduced. Its either physical (ear infection/cramps) or emotional (she hasn't been given enough attention - i didn't say hello to her when i got home from work or everyone has been fussing over john and ignoring her.) However, her needs are fairly simple. She has toys she likes to play with, she can get up and get her water herself and we encourage her to get her occasional soda herself. I give her the food she eats for lunch but she can feed herself. I give her the clothes to wear on and unless we are going out, she can dress herself. if we're going out, I need to make sure the bra is on and the clothes are right side in and on.<br /><br />All this is leading to John. He's been in an institution for a long time. He has had to compete with others for attention and he has absolutely learned some bad habits. He's also on medications for those anti social behaviors. But one of the things that is slowly working with him is to consistently and slowly continue to hug him, stroke his hand and even tickle him. These simple, normal interactions remind him of the joy of human touch without it crossing over into that super paranoid "is this appropriate."<br /><br />This isn't meant to disregard the very real issue of sexual abuse particularly in those with developmental deays because they can't tell us. However, touch is absolutely vital and when someone is deprived of it, its as abusive as a slap.<br /><br />These 'good touches' have awakened in John more of a need for his "Mama" and when my mom is around, he constantly looks to her for attention and food. In many ways, food has become even more his comfort than before (and he has always loved to eat.) But given his mental age, that makes perfect sense.<br /><br />If it was just that John needed to adapt to 'good touch' and stop the pinching and possibly learn how to amuse himself instead of needing out external stimulation - then we wouldn't have to place him. However, there's doubt he can get to that point in his development and that kind of change took years for my sister and she could feed herself and dress herself before.<br /><br />That five pm to midnight shift is exhausting but its also reinforcing that he cares that we are around. Sometimes in the past, you sometimes wondered if he noticed we were here. The answer is "absolutely." So in my eyes, a group home that can understand that - that can work on redirecting him - time in a recliner with music on the tv, time sitting at the kitchen table while dinner is being made and yes, a room where he can be safely contained if he has an outburst and he needs to 'calm down'. Those four to seven hours are the difference between sanity and breaking point for my mom and to some degree myself.<br /><br />However, it is absolutely great to be able to narrow down these behaviors and eventually maybe we can help them change. Like I said, it took a lot of time with Angie.<br /><br />Timeline is touchy dependingon what is available but another month probably though something could happen in a week or two or it cold be a matter of waiting for an almost perfect fit.<br /><br />I sit here and he's sleeping now. He's on the couch. He doesn' want to be in his room alone and while he struggles with continence, he has a depends on and there is a rubber mattress on the futon as well as a layer of cotton towel, soft bath towel and a 'cotton absorbent' chuck.Holliehttp://www.blogger.com/profile/05641789266856027000noreply@blogger.com0tag:blogger.com,1999:blog-7212932701800673455.post-27537189467080386662009-07-15T11:08:00.002-05:002009-07-15T11:28:10.098-05:00All about meHi, my name is Hollie - that's with an -ie not a y. My mother loves Christmas but I was born in June so... Hollie. I correct people on the spelling of the name because I am not "holly" - when I see the name it doesn't even register that they might be referring to me. Weird, huh?<br /><br />I also just realized that my initials (first name, middle name, last name) fit the names of my siblings (my middle name starts with A and my last name starts with J). I'd never realized that before.<br /><br />I am less tired and frustrated than I was on Friday. I do have a slight urge to run away but I'm attempting to do less of that. I went swimming at the YMCA last night and will probably go again soon but it depends on when I'm dropping things off for my rummage sale. The swimming will be my hobby, my escape, my coping mechanism for as long as it cheers me up.<br /><br />My brother needs constant interaction and supervision. That, I think, is what is so difficult. We work all day only to come home and have to feed him, bathe him and keep him occupied until he's sleepy enough to go to bed. If you attempt to relax by writing (what I do on my computer) he'll try and take it out of my hands. Since I like my time to myself, I get pretty irked when I have to constantly be on 'red alert' when he's around.<br /><br />Huge self assessment of failure. Logically, I know that its life - that having a life is important, that being whole and healthy for other people in addition to my brother is also important - blah blah. But logic isn't that feeling of guilt that settles in my stomache. It is what it is.<br /><br />We are still waiting to hear about assessments and placement for John. Mom has made some calls and is waiting to hear back. So much paperwork and time. Right now, I get John dressed and sometimes feed him if Mom runs late and then I put him on the bus at 8am. Mom does the rest including nights.<br /><br />I really just want - well I don't know. In 15 months, I've moved 5 times. Do I want my own room back? Do I want to travel? Do I want to leave the house more? Write more? Read more?<br /><br />I'm unsure and out of ideas.Holliehttp://www.blogger.com/profile/05641789266856027000noreply@blogger.com0