Christmas

What 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.

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.

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.

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.

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!

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.

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.

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.

So that's life in our little world. Day by day.

Thanksgiving

Its 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.

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.

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.

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.

November 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.

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.

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.

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...

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.

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.

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.

http://www.crackle.com/c/Star-ving

November and all its cracked up to be

John. Oh what can I say about John. He's currently apparently not sick. Woohoo!

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.

If only.

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.

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."

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.

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?

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.

He is my brother, my baby brother and there are answers yet to be found.

Where 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.

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.

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.

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.

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.

So 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.

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.

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.

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.

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.

In the meantime, there is something I've been thinking about: http://larcheusa.org/

A Family of Strangers

Let 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.

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.

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.'

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.

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.

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.'

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.

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.

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.

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.

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?

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?

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.

But we must all get along because its the best its going to get for John.

Hollie's book

My family has had a complicated life.

I have had a complicated life.

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.

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.

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.

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.

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.

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?

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.

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.

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.

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.

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.

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.

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.

There's more and I'll stop rambling now but that's our story. Complicated. Crazy. Compassionate. Challenging.

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.

John and Pneumonia

For 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.

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.

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.

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.

Temporaryness

This blog is about all of us - me, my sister and my brother.

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.

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.

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!

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.

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.

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 ;)

Potential - grief

John 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.

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.

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.

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.

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.

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.

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.

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.

John 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.

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.

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.

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.

We're grieving the potential but there is more a sense of relief. We were going absolutly nuts. Constantly agitated. That will change now.

Love you John. always.

The 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'.

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.

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.

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.

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.

Johnnie

I 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.

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.

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.

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.

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."

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.

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.

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.

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.

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.

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.

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.

All about me

Hi, 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?

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.

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.

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.

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.

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.

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?

I'm unsure and out of ideas.

Loss and what is fair

I'm tired and there are tears running down my face. I feel defeated. I don't understand my brother. Its like there's this murky fog between us and even with massive amounts of calming medication, he still is singularily focused on food, mayhem and pinching.

Oh the damn pinching. The reaching out to tear the computer out of my hands. THe grabbing of an ankle that I've already just had pins out of and that still hurts. He ate at 8:40 am and he's wandering around the kitchen wanting more food. He had a snack at 10:00 including another as needed dose of both of his calming drugs.

In a minute I'm going to put the tv on and try to sit next to him to see if he'll attack me or be still. I'll feed him another pudding or maybe an early lunch. Some water. Some music.

My mom is arranging for new placement for him. Two days, two weeks - I'm not sure. He will get on the bus here instead of the place my sister gets on the bus because he was evicted from there for throwing chairs.

Life isn't fair. We lose people we love - not only to death but to disability. Something is going on inside his brain. Schizophrenia? Autism? I don't know. I try to connect and i hit a wall. I feel like a failure of a sister. Even more so, I watch my dogs and my sister try to get close to me and I'm so frustrated with my brother that they stay away because I feel so awful.

This is not a "god I love that my brother teaches me" things post. This is a "dammit its really not fair that life gives us these challenges." Somewhere in this whole equation is my faith that there is a reason for everything but in these moments you wonder, truly, when he was being kept alive on a ventilator, did we do the right thing by keeping him on it?

Of course I know the answer but look at the prognosis for his life. There's very little funding for low functioning disabled adults. He'll be placed in homes that will continue to cope with his good days and bads with medication, time outs and naps and food. THey will be paid by the state and they will take a burden off this family who tried very hard but failed.

We can't put one member above all others - that's not what my faith, my family values are about. My mom, my sister, my cousins - all of us are affected by this challenge that has raised our stress level to red alert.

So in failure there is grace. Acceptance of one's limits. Of my limits. We had to ottry. We hoped to succeed. We did not. We will survive as a family just not the way we expected to.

Fiction helps us escape a harsh reality

My brother is challenging and today he was out of control. While my sister can participate gently and happily in events, my brother needs more supervision and special attention. Today this escalated into him throwing a chair and a few other things at a home that he waits at to get on the bus.

My mom and I have been dealing with his moods, his aggressiveness and his changes for awhile. We keep asking the question - how long can we do this? Can it get better? Can we do something?

The answer, for now, is that we can't anymore. Tomorrow we involve social workers and Crisis intervention. I'm staying home to watch my brother. My mom is going to work and going to be initiating phone calls. We're relieved and heartbroken. We tried. We learned. But we failed.

This makes the potential loss of a fictional character far less dramatic.

Strategy...

John is ill again and on antibiotics. Pneumonia is so very dangerous for those in precarious health stages and we are afraid it will settle in again.

Knowing he would be agitated by the antibiotics, mom decided we wouldn't fight with him to go to bed. We'd use his PRN meds (as needed) to calm him down and we'd go through the initial routine - bathroom, bed but when he came out, instead of making him go back to his bedroom, we'd let him sit on the futon and sleep there if he falls asleep. There was some minimal fussing. He got up, he wanted mom to give him more food or water but a few more circular routes - bathroom, bed, futon and he finally settled in and is now asleep.

When I got home tonight he was an angel. All smiles and even a hug. He's mimicing Angie now in putting his hand up when I go by so I can give him a 'low five' so to speak.

So another phase in the journey. Confronting his challenges from mortality to the banal "I wonder if he's autistic as well as having Down Syndrome - but would we treat him any different?

The "Downs" of "Downs"

Its 9pm and past John's bedtime. He's fighting sleep and I just do not know why. I've tried putting him in bed when he first got sleepy. Usually after his 6:30pm med dose, he's tired by 7 and sleeping so soundly I can't move him by 7:30pm. But not this night.

Take 1. Bathroom then bed. Lasts five minutes before he's wide awake and back in the living room.

Wait until he starts to doze on the couch again.

Take 2. Straight to bed. Lasts 2 minutes, he fights past me through the door and into the living room.

Ok new tactic. Back to bed. Only he struggles, scratching, pinching and finally sitting down on the floor in the hallway. I'm half heartbroken and half plain old angry.

Why? No antibiotics this time. Just John. Nothing seems out of the ordinary. He's not sick. We had an uneventful night. No logical reasoning and of course he can't talk to me and tell me why.

Take 3. He gets up and I stand in front of him, telling him calmly its time for bed. He has to get up for school tomorrow. He pushes but I don't budge. Standoff. He's getting tired enough that I can take him back to bed. He lays down. I pull the sheet over him. I stand in his room. Each time he tries to get up, I say no, its bedtime. This just wakes him up more. I give up and take him to the bathroom. He doesn't have to go. I bring him back out to the softa in the living room.

Take 4. I get one of his 'PRN' (as needed for those who don't know) meds. It dissolves quickly in his mouth so I give that to him along with a little water. I wait. And wait. He dozes but as soon as I get up to move him to go to bed, he's wide awake and fighting me.

Take 5. He's fallen asleep. So deeply that it takes my mom and I carrying him to his bed to get him into bed. Literally, mom had his arms, I had his legs. We both have bad backs to begin with. Finally he's in bed.

6am comes and he wanders out of his bedroom naked, the smell of urine following him. I'm in bed down the hall and I smell and hear it and I groan. He walks through the house to mom's room. She's already awake and puts him on the toilet and checks out his room. Sure enough, his bed is soaked. The 'chucks' (cotton absorbent pads laid down on top of the sheet) are soaked too. Time for laundry. Plus a sponge bath for John since he has to go to day program.

This doesn't happen every night. It didn't happen at all when he first came home from the hospital. Then the antibiotics. Then those pills were done and now nightly we have to find that 'sweet spot' between him getting sleepy and falling deeply asleep.

I have scratches and bruises on my arms. I can't explain to people who do not have an adult child like this why this is happening. I don't know. Is he partly autistic? Is there some other diagnosis? Does it matter? He's medicated for all kinds of behavioral problems. Its just so tiring. Is this what having him 'home' is going to be like? There's a point where the stress breaks you. I don't want to get to that point.

Extended Family

Like all families, mine is complicated. Divorced parents with my father now deceased. Skeletons in closets that keep some of us apart for better or worse. But sometimes, inspiration strikes and slowly light enters that dark space that builds up between people and reconciliation begins.

My father died in June 2007 - after my birthday and after Father's day. I didn't know how sick he was and maybe if I had, I would have put my pride aside and seen him. If he knew how sick he was or had let his pride go, perhaps he would have asked to see me. But we didn't and that time is past. I hope there is an afterlife. I choose to belief it because I feel lost otherwise. I do however cherish the family I have left even more. This is a big part of the reason that my mother and I brought my brother home even knowing we had to sacrifice because how would we feel and how could we live with ourselves if we didn't try.

Months passed after that horrid June and slowly the truths began to come out about what really happened and the sunshine helped mend the wounds all of us that loved my Dad were feeling. Those of us who were too proud began to open up and say "we were all wrong in one way or another" and we should talk about it someday, when we're ready.

Time doesn't so much heal as dull some of the pain and remind you of what you have left. Finally, after two years, I went to see my Aunt, my dad's sister and her family. It helped that my cousin who is my age stayed in touch with me and gave me the courage. I can be very skittish some days.

Unabashedly I say that I had a wonderful time. My brother was on his best behavior - which leads me to think how tied in to all of us he really is emotionally even when we can't see or understand it. Or maybe the divine intervened and calmed his restless soul. My sister had a lovely time as well. I saw cousins I hadn't seen in a long time and children of cousins. I hugged my aunt, my uncle, my cousins, my cousin's fiance. It felt good. It felt like peace had finally found me.

The future is always uncertain. We're having a small bbq soon and another family member has come home to recuperate. We're a very large extended family and we have all made so many mistakes because, well, that's what you do when you're young and struggling.

I sit here on a Saturday morning listening to the snores of my brother (pancakes for breakfast plus his medications have him in a deep sleep - I'm just hoping the milk of magnesia keeps his tummy settled until he wakes up - I don't want any accidents on the sofa!) My sister is playing with papers and waiting for me to put on the tv.

Sharing a room

When we were young, we shared a room - either Angie and I, or John and Angie, depending. In the winter, when it was cold upstairs, we'd share a bed. (not always fun when one of the three kiddos drank too much before bedtime! I wish I was kidding!)

But I haven't shared a bedroom, except with a bf and a husband in a long time. Now that John is home, Angie and I are in the same room again. Which is slightly tricky because she's devious! She's always looking at what I have on bookshelves or hung on the wall or on top of my dresser and out of nowhere, she'll sometimes grab something and play with it. Yesterday it was a blue lanyard from when I took classes at the local tech school. I have a couple signed pictures on my wall at home and some Doctor Who toys. Plus my history books and some random knick knacks.

Part of the joy of having her in my room is that at any moment, I might be redecorating!

One of the other challenges is that we go to bed at different times. If I go to bed and decide to watch Torchwood or Doctor Who or Pitch Black, then that can wake her up. She also insists on the door being closed.

I have a Queen bed and she has a twin. They were at a 90 degree angle to each other but I switched them so they were end to end with a gap of about 3-4 feet. This morning at 4:00am when I was talking to myself (yes I do this, it helps me process my thoughts), I felt a hand on my foot. Thankfully I remembered Angie was there or I think I might have had a flashback to a wet bed! I ask her sometimes what she wants, to see if she'll respond. Her usual response is a shrug or a turn to the left which means "No" and everything else means "Yes" and then she'll do what she wants to do. Well this time, apparently it was code for "I'm going to get into bed with you since obviously we're both awake". What followed was about 30 minutes of her giggling,playing with my hair and her laying her arm across my shoulder to get me to tickle her. I finally got her to go to sleep and then we got up a few hours later.

Such goofiness!

Random comments - Fathers day 2009

I'm not fond of this day. I never used to be but its worse since its after my birthday and after the anniversary of my dad's death. However, I do wish a very special Happy Father's day to my godfather Ross who intervened on my behalf so I could go to my Dad's funeral.

I'm sitting in our living room right now watching country music videos. Angie and John like the music and the action. When football season rolls around, John will watch that. For some reason the action on the screen really attracts him.

My sister is outside on one of the two swings. One is traditional 'swingset' but reinforced for her adult weight (and mine to be honest, I like to swing too!) and the other is on the deck and is just a two person seat. She's on that one. Not quite the same height to reach but closer so I can check on her more often.

That, along with someone elses comments on UpsNDowns, reminded me of how Angie used to wander when she was young. We live in the country so its not quite the same plus it was 20 years ago. But she would walk to the neighbors. It happened so often that we had to get a chain link fence in the backyard. Part of what made raising Angie and John so challenging was the fact that we were also trying to make a living on a dairy farm - Neither tasks are easy but when you add them together, it gets a little crazy. I remember Angie learning the route to walk around the barn with a binder twine in her hand and she would just do loops while we were milking.

John was not quite as active. He's had hip surgery to help 'straighten' his legs and add his mobility. But he was mobile enough to get into the refrigerator while we were in the barn. We finally got a strap to 'lock' the refrigerator. We'd be milking cows and every fifteen minutes running to the house to check on John. Sometimes dad would be home but usually it was mom and I in the barn, angie either in the barn with us or in the house, and john always in the house.

I suppose I don't always think about the constant stress we were all under to meet all these obligations. Baths and eating for ourselves, homework for me, teaching angie and john, bathroom breaks plus raising animals, keeping them healthy, milking and then social obligations.

That is one of the reasons this chance we all have to live again with each other is such a gift. Its a cosmic 'do-over'. Time for us to focus on our relationships with each other, time for our own self-improvement and time to just be together.

Dad

In a few days it will be father's day. As I stated before, my father died two years ago.

Its hard to sum someone up, alive or dead, in a way that gives them credit for what they did well but doesn't absolve them of their mistakes. We all make mistakes - that is a given.

So let me say this - I feel sorry that my dad wasn't able to participate fully in our family because of his physical and emotional issues. He was able to 'corral' John when the 'little boy' of the family got rambunctious. He loved us all even if it was hard for him to show it.

But he was gone a lot. I wish he could have been there more. I wish he would have helped change diapers and tried to learn sign language. I wish he would have taken us all somewhere for the day so mom could have time to herself.

We did have some spontaneous trips - to parks, to 7 island and other places up north. I remember us all being in the water by Uncle Albert's cabin and Mom, Dad and I being so proud of Angie and John swimming like the fishes they are.

He's gone now and I miss him. Angie and John don't really comprehend that he is gone. They just know when I'm sad. One of the joys of living with Mom is that we're a family again. Its kind of odd since its 18 years later but sometimes you do get a chance to 'do things differently' as a family unit - maybe we can do it better this time?

Like music therapy. Oh I cannot say enough about that. I wish I'd known more about this when I was younger. Mom too of course. Sometimes you spend so much time trying to get through one crisis after another that you miss the little things you could have had fun doing - like putting together a mix cd and watching the kids reactions and picking out the ones they love the most.

You can only live once and losing our dad really drove that point home. Being with mom again is another chance to enjoy the family and the gifts you get from Adults with Down Syndrome. And how it makes you a better person.

What about Mom?

You know how kids are - always the last to thank their mothers!

My mom is an amazing woman who has lived a challenging life. But she has always, always, always made it very clear to all of us, how much she loves us. As a parent, I believe that is the best thing she could have ever done.

We grew up on a farm and my dad wasn't as involved in the care of the kids as Mom and I were so it kind of became "us against the world" while we balanced the demands of life.

Now that I'm 35, I'm amazed at what my mother was juggling when she was my age.

My parents divorced six years ago and then my dad died two years ago. They had separated many years before that but it still hit us all very hard when he was gone.

While we don't always talk about it, one of the parts of raising handicapped children that is most ornerous is dealing with the financial side of things. They may have medicaid or medicare, state and/or federal funding and some kind of disability income. But it is never enough. They need 24/7 care. We need vacations. They need bars installed in bathrooms so they don't fall down. You spend money on rubber sheets and new bedding because of accidents. Clothes and personal items, getting pizza, going to doctor appointments (where you have to take off work) and the day in and day out of having to make breakfast for someone else, pack their lunch, wash their clothes and drive them to school or the bus stop.

My mom handles most of the financial stuff now. I did it at one point when I had Angie and its maddening. How Social Security determines what amount each person should get based on the household income and expenses is fairly illogical. We moved and our rent went up but Angie's Social Security income went down because the change in rent was seen as a 'gift of money'. Huh? Yeah I don't get it either. It took the involvement of an elected official to straighten out the payments.

Of course its all worth it. Mom and I feel like pieces that were missing are back now that both Angie and John are home. Each day (and today makes a week I think) that John wakes up dry is a little internal 'happy dance'. He went to bed without fighting again last night which I'm so thankful for. Its odd that his antibiotic would have affected him that way but apparently it did. Angie went to bed only a few minutes after John last night and she was still happy (Yay!). (We have to stagger bedtimes because Angie is 'older' and since John is so much needier, its one way we can show her that she is 'special' too.)

John - little victories

Thank god/dess that antibiotic is done. I'm not sure why it affected him that way but it was like shooting him up with meth/speed.

He didn't want to go to bed, he fought us, pulled mom's hair, pinched me and we turned into guard dogs on that door when he'd try and open it. Sheesh!

However, two days after he was done with the antibiotic, peaceful dreams. I took him to the bathroom then to bed when he started to doze around 7:30pm. I praised him for being good, for laying down, for pulling the blanket up to his chin by himself. Then about ten minutes later, I opened his door and when he was still in bed I said "good Johnnie!" and he smiled. Half an hour later he was asleep.

Angie even went to bed last night without a toss of the hands (when you ask her to do something she doesn't want to do, she'll stiffen her arms and throw them out to the side - almost the opposite of the caricature of the 'typical housewife - i give up' visual). Instead, she put her sunglasses on the cupboard and giggled down the hall into our bedroom.

She has a weird routine at night sometimes. She'll go lay in bed, then she'll go to the bathroom and then for some unknown reason, she'll use her hands to drink water out of the tap. We'll put a glass in the bathroom but she won't use it. Angie very very rarely has accidents at night - like once a year.

John has been having more and more dry days. To deal with the issue, we'd been using a Depends on him at night plus 'chucks' under him. But he's been really good and we're switching back to underwear again. Every little victory is still a victory. Its still priceless to see their smiles even when they are annoyed at us.

John

John is the baby, the one with the most medical challenges and the one who is developmentally the most delayed. All of these contribute to him having very frustrating behaviors. He can pinch, yell and simply sit down and refuse to move. Its hard to love him when he just left a bruise on your arm. Not because you don't love him but because its so hard to understand why he seems to want to hurt you.

The most joyous part of starting this blog now is because its an ongoing documentation of how we are evolving and adapting to John and how he is progressing from being at home with the ones who love him most.

Angie has gone through tremendous changes as she's been home with us in the last five years. She started from a very different place than John but she had behaviors that had sparked a new medication (which sparked my belief that it was time for her to be taken out of the group home.)

John was in the hospital in April and that bout left him with permanent lung damage. Because my mother lost her trust in the group home system for John (just as I had lost it for Angie), she brought John home. That prompted me to move home to help.

Its hard because while Angie can do many things on her own, John cannot. He eats too fast so we have to feed him or watch him carefully or he'll choke. He is very routine oriented and even if he is sleeping, it seems he'll wake up at mealtimes. He has continence issues especially at night.

But these issues are slowly changing. Each night that he is dry its a celebration in our house. Every smile that lights his face gives us a little thrill. I love that feeling. It really makes it worthwhile and encourages us to keep going even when you're so frustrated you want to cry.

Right now we're dealing with his desire to not go to bed. He is tired. He eventually falls asleep but we have to keep his door closed and keep him in his room or he'll stand in the kitchen because he wants food or drink (even though he's eaten and had plenty of water.)

John does talk more than Angie. He can say Mama, Barb, milk, cake, pizza, hamburger, hot dog, cheeseburger (yes food is a major theme!) He is on a lot of medications for behaviors too and I know they encourage his hunger but he's always been obsessed with food.

That's really the whole challenge for all of us - the changes in Angie and John and Mom and I from 20 years ago when we last all lived together. Who are we? Who were we? How do we do it better this time? And how do we help John overcome behaviors that developed while he was away? Stay tuned!

Angie

My sister is the light of my world. She doesn't talk except to sort of say "Pop" or "Wow" yet she understands so much more. Like "can you get me a soda?" which to her means a can of whatever she can find in the refrigerator - Mtn Dew, Coke, Busch Light, etc..

She likes to play with hair and this frequently endears her to her female caretakers either at 'school' or where she gets on the bus. Angie the hairdresser. She developed a habit a long time ago of chewing on her fingers so her hands are calloused and we often moisturize them. She had that little habit down pat. She can get the lotion on - it won't be spread evenly or thoroughly but it will be on. She loves having her fingernails done and usually on Fridays the Day program she goes to puts on whatever color Angie chooses. Lets just say if she's not color blind, she apparently is a flamboyant gay man.

She loves me, loves my mom, loves my aunt and cousin. She tolerates our brother John and the dogs although she has been known to cuddle Betsy. She mimics me a lot and unfortunately picked up my habit of disrobing when I enter the privacy of my house. That's a habit I can't quite shake her out of. Oops!

She's always been my little sister and yet she's the middle child. She's higher functioning than John even though he speaks more words. She modifies her own sign language - she can say Milk and Cake and Dance and Please. She makes her bed better than I do and she will fix John's blanket and pillow when he gets off his couch to go to the bathroom. She's usually very gentle but occasionally, for reasons we can't always predict, she'll use her hand to smack our leg or the dog when we walk by. Sometimes we think its to get our attention; other times because she is agitated.

Angie is comparatively very 'easy' compared to John so we have to make sure we go out of our way to give her the proper amount of attention. She has a later bedtime, she can eat independently and she gets a longer bathtime. She likes to cuddle but will also let you know when she's done by getting up and moving. I'm also her favorite.

Hollie (aka me)

I'm 35 and I work in the IT industry - technical support to be precise. I've been a consultant for a long time which means I've had a job a year for the last 13 years. Sometimes I move on because of an opportunity, other times because of family needs and of course others because of differences of view between myself and my coworkers.

I like what I do. I find technology fascinating and I like helping people learn what they need to in order to do their job. I like when they ask questions, even benign obvious ones because then I can teach them the right way to do it. My favorite thing though is when someone I've helped then goes on to help someone else.

I can't help but bring my work home with me. In my spare time I play computer games and use social networking sites like facebook. I email about as often as I use my cell phone. I'm also tech support for any family members who provide the soda.

I have a terrible Cola addiction which I occasionally try to kick.

Speaking of kicking, I'm not doing a lot of that lately because I slipped and fell on the ice and hurt my ankle (well I broke it.) I tend to do that kind of thing. "Clutzy" would be putting it gently. My mom jokes that she should have named me Grace.

So that's one part of me. The other part of me is 'Hollie as older sister.'

I can't remember a time when my brother and sister didn't need me to take care of them. I'd always known that if anything happened to my parents that I would be responsible for them. I also always knew that someday they would live with me. Its weird to write but I say it out loud because I've come to realize most people don't think that way. I also had and have the dream of a family with children of my own but my brother and sister have always been a part of that.

I was married for six years, 2001-2007, and my sister came to live with me in 2004. When I divorced, I moved home and it became me, mom and Angie. My mom took over a lot of Angie's care while I was recovering from my divorce and then my dad's death. I even had a short relationship which took me to milwaukee for a few months. But home, with Angie and mom, was where I believe I was meant to be.

My brother is a recent addition because he was ill in April and it became clear there wasn't a place currently available that could take care of him that we were confident in. That's when I came back from Milwaukee and that's when we all ended up in the same house again.

I don't plan on spending my whole day, every day, being a caretaker for my siblings. But its absolutely a part of my life every day. I wake up early enough to hear my mom getting them ready and I help when she's running late or one or both is being difficult. On weekends, babysitting and lunch tend to be in my domain. The rest of the time, I'm just 'there', like the semi-traditional 'dad'. Which means I'm more of a disciplinarian than "Mama" is.

Introduction

Introduction.

I'm Hollie, the eldest sibling of three. Both my siblings, Angie and John, have Down Syndrome. We're all in our Thirties now and while we had our own separate lives in the last decade, the last few years have brought us back together. We now live together, along with our mother, in a house in the country with three dogs and a big back yard.

This is about our life.

The title of the blog comes from how I've signed cards my entire life since neither of my siblings can write. We are individuals but we are also a unit.

Hollie (and Angie & John)