Down Syndrome - The Real Story

Update

2011-01-22T16:55:00.000-05:00

I know it's been forever since I've written anything, but I know there are still a few of you subscribed, so I thought I'd provide you with an update. Chelsea is doing wonderful in her new home. In a few months she has gotten to experience more than she would in a lifetime of living with me. She has a new wardrobe. She has been to the beach in South Carolina. She was present at the birth of her new cousin. She has learned to cook. She has started an exercise class with her foster mom. She is finally having the life she so richly deserves. As for me, all the health issues I was having while she was still here turned out to be cancer and I am so glad she was not here during my treatment and surgery. All is well and I have been given a clean bill of health, but I don't know how on earth I would have taken care of her during all of that. Once again, I believe I have made the best decision for Chelsea.

The Right Thing To Do

2010-05-29T11:40:00.004-04:00

It's been awhile since I've posted, mostly because between taking care of Chelsea and my escalating health problems, I just chose not to make time for blogging. Depression also played a role in my decision not to blog, I just couldn't deal with one more thing that needed done. I decided to come back today to let all of you know about some major changes that are taking place. Over the last few months I escalated my attempts to get some sort of help caring for Chelsea. My requests were always met with a negative response. It seems there truly is no help in the rural area I live in. I spoke with the local chapter of the Down Syndrome Association and, nope, nothing like that here. I called Job and Family Services, sorry, no help here. One evening, I sat down and really took a long, hard look at the situation. I had just come from the doctor, where I was informed that if I didn't do something about my stress level, I would soon have either a heart attack or stroke. Great advice, but how does one do that under these circumstances? That was the question I had to answer, and answer quickly. I looked at my struggling marriage, my 18 hour workday, my house that never gets clean anymore, and that sweet child who doesn't get the attention she deserves, and made a hard decision. I called Child Protective Services. To cut to the crux of this story, Chelsea is being placed in foster care. Her new foster mom is someone who is a special education teacher, a trusted friend and who Chelsea loves intensely. She will be living a block away from me. She will have a brand new set of bunk beds for sleepovers and a new wardrobe. She will be spending a week at the beach every summer. Sweet Chelsea is moving on to a new and wonderful life, the one she should have had from the day she was born. I have cried until I can cry no more, but I am comforted by the fact that no matter how hard it is to give her up, it is the right thing to do. After some time has passed, I think I can then start to put my own life back together, although I don't know what that life will be, I will manage, and I will know that Chelsea is safe and loved. For those of you who have been supportive and understanding throughout the time of this blog - you are good people and I thank you from the bottom of my heart. Your support is so important to those who are struggling, and I know I'm not the only one. I was just one of the few willing to put my struggles out there for all to see. To those of you who were judgemental and full of condemnation, well, what goes around comes around; I wish you well. I may be back with updates on Chelsea's life, or I may not, but either way, I did the right thing.

Halloween Pumpkin Pictures

2009-10-18T21:40:00.008-04:00

I thought you guys might enjoy pics of Chelsea picking out a pumpkin to decorate (no carving here!).

Looking for your input

2009-10-11T13:59:00.004-04:00

As some of you may be aware, I am building a directory of DS resources. I guess the lack of resources available for my family has driven me to do what I can to keep others from being in a situation similar to ours. Maybe I can learn a thing or two along the way as well. At any rate, one of the directory sections is Down Syndrome blogs. I would like to extend an open invitation to those of you who blog about your experiences as DS caregivers to include your blog in the directory. If you would like your blog included, just leave me a comment with your link and I will see that it is included. Feel free to let me know if there is something particular you would like included in the description, otherwise, I will use the information directly from your blog. If you would like to take a look at the directory to see if you are interested first, it can be found at http://downsyndromehelp.boomja.com/ Some of you may find your blog already there, if so, let me know if you don't want it included.

Nice blog

2009-09-26T11:43:00.001-04:00

Please be sure to check out http://billandria.blogspot.com/. Great blog with much happier content than mine!

By popular request - Pictures

2009-09-13T11:15:00.005-04:00

Chelsea with her class on a field trip to our greenhouse

Chelsea swimming with her cousin

Chelsea blowing out the candles on her birthday cake

Chelsea with her dad, step-mom, and siblings

Another day in paradise

2009-09-13T10:53:00.003-04:00

I woke up to a beautiful morning this morning. The sun was streaming in through the window, a pleasant breeze bringing me the scent of fresh air. In my state of not being quite awake, I thought "What a nice morning, maybe we'll go have some breakfast somewhere." Then I woke up. Then I felt the sadness wash over me. I remembered that there are no more pleasant breakfasts with hubby at the local diner, no more mornings spent cuddling and enjoying the sunshine. No more mornings spent planning our future over coffee. This is our future, right here, right now. Do I regret giving up my future to insure that Chelsea has one? Not a bit. Do I desperately wish there was another solution? Absolutely. During the few short weeks my son had Chelsea, he signed her up on the group home waiting list in an adjoining county. The case worker told me that he told her point blank that he would not take care of her until she is 18. What a tragedy that this loving little girl is the subject of so much controversy, that her own father doesn't want to take care of her. It is the one thing that makes me ashamed of my son. I pray daily that some solution that is truly best for all, most of all Chelsea, will come to light. No matter what the cost, I will not abandon her or put her in a bad situation just because I want my life back. I will continue to love her, take care of her, and then cry in private for as long as it takes to find a solution. All of you who pray, please pray for us, for our family, for Chelsea. She deserves the best, and I am not capable of giving her more than mediocre, so please pray for something wonderful for her.

Just thought this was good...

2009-09-07T15:13:00.001-04:00

Chelsea's Homecoming

2009-08-28T18:26:00.002-04:00

Well, on Tuesday evening, Chelsea came home without much fanfare. My son dropped her off at around 7:30 pm and she had school the next day. She sat in her room watching a favorite movie for about an hour, and then asked me what time her dad was coming back. When I explained to her that she was back with us now, that her time with dad had been just a little vacation, she smiled and jumped under the covers. She was asleep in five minutes. I had no idea that he had not explained anything to her. She had not had a bath, and he didn't bring her clothes until 10:30 that night, clean but thrown unfolded in a box. Not my idea of preparing for the first day of school. That's just not how I live. I have everything ready the night before, baths over with, clothing laid out, etc. I like a nice, calm, organized morning. To make matters worse, I overslept the next morning, so it turned into a mad dash to get ready and get out the door. Chelsea took it all in stride, I, on the other hand, was a very unhappy camper.

The break is over, even if she isn't home yet

2009-08-20T20:46:00.002-04:00

We have a few days left, but already I am preparing for school to start, getting her room cleaned, and having anxiety attacks about how I will schedule my doctors' appointments around her school schedule and the absence of anyone to babysit or get her from school if my appointments run over. I have appointments with specialists, and those can be all day events. I am worrying about how I will keep up with her laundry, because our dryer is irreparably broken and we can't afford a new one (or even a good used one). I worry about how I will take care of her if my family doctor's predictions of my final diagnosis come true. I think I am worrying too far ahead, yet I feel like I have to. They say that God never gives us more than we can handle, but I think that being 50 and taking care of a Downs child, being dirt poor, and having a possible diagnosis of MS (and no health insurance) hanging over my head is a bit much.

One more week of freedom

2009-08-17T21:39:00.003-04:00

School starts next Tuesday, so Chelsea will be back with us on Monday evening. I have such mixed feelings about it. Already I dread the loss of freedom. Back to begging someone to watch her so hubby and I can go somewhere together for a couple of hours. Back to the morning routine of getting ready for school; gone are the leisurely mornings filled with newspaper reading and coffee drinking. There will be no more uninterrupted conversations with my husband, no more sleeping in on the weekends, no more eating dinner at 9:00 pm just because we want to. But there is also a part of me that is excited to have her back. I miss her, plain and simple. If she's here, I know she's safe. This has been a wonderful few weeks' break for us, no doubt about it. It has given my husband and I a chance to reconnect, to remember who we were as a couple. I only hope we can hold on to that connection when Chelsea comes home again.

Chelsea is 15 today!

2009-08-03T17:57:00.000-04:00

I can hardly believe she is 15 years old today. It seems like just yesterday that I held her in my arms just minutes after she was born. Time goes by so fast, and it doesn't seem to matter whether times are good or bad, they still fly past us at the speed of light. When I blink again, she will be 18, then 30. We are celebrating her birthday this coming weekend, it is the only time all the family can get together. I am looking forward to it, it is one of the rare times when no one cares if she smears food all over. Her dad has a fenced yard, so the kids will be able to play and fling cake to their hearts content. In spite of all the bad, I am so grateful that she was spared the night her sister was murdered. I wish all of this had turned out differently, no child should have to be raised by old folks..lol. She should be where she is right now, at her dad's, playing with her brother and sister, being a kid. Not with us; we have no friends with kids, no fenced yard for her, and we're too tired to do much after working all day. She will be at her dad's for three more weeks, then back with us in time for school to start. I will enjoy and make the most of the three weeks of freedom I have left, but I will also miss her every minute of it.

For those who don't know

2009-08-02T11:29:00.000-04:00

I often get get comments pointing out how depressing my blog is at times. I am quite certain that many find it to be a "downer" when perhaps they were looking for something uplifting. I thought maybe this would be a good time to bring to light the reason we have Chelsea in the first place, for those who don't already know. Perhaps knowing how we came to be Chelsea's guardians will explain why our experience is so different from those who are parenting a Down's child by choice. It is a rather long story, but I will summarize it.

On July 13, 1999, Chelsea's baby sister was murdered by her mother and step-father. After much emotional trauma, dealings with Child Protective Services, and two murder trials, my son was given custody of Chelsea by the courts. He was a newlywed at the time, and the combination of the murder itself and having a disabled child placed in their lives with little warning caused their marriage to disintegrate and they divorced. My son tried valiantly to care for Chelsea on his own, but amidst his grief over his murdered child and his divorce, did not cope well. Chelsea was not thriving and learning as she had been before his wife left. In order to protect Chelsea and give her some kind of chance in the world, my husband and I agreed to take her until he could get his life in order. It has been years now, and he still cannot seem to cope with her. I understand this, because I can barely do so myself.

I had only been married about a year when Chelsea came, having been happy and enjoying my life for the first time in years. Being middle-aged and suddenly have a disabled child to care for does not lend itself to happiness. I had always looked forward to that time in life when my boys were on their own and I could once again get to know myself as something other than someones caregiver. One event, on July 13, has had such a ripple effect in all of our lives, but I cannot let go of the thought that Bethanie's murder not only ripped a part of my heart out forever, it also cost me my happiness. If you really take the time to think of the emotional dynamic that takes place every day as a result of these events, you may have a better understanding of why my blog is not all about the wonders and joys of a Down Syndrome child. I will love protect Chelsea until my last breath, but I can't help but mourn the lost years of my life, just when I had started to enjoy them. For more information about Bethanie and her murderers, see my blog "Never Another Child" http://neveranotherchild.blogspot.com/ Thanks for reading.

The problems with the solution

2009-07-28T21:52:00.001-04:00

My son came and got his daughter. Just like that, no fuss, no stalling, no complaining. "Well, that was easy", I thought to myself. I should have known better. It was less than 24 hours before the calls and text messages starting. Pleas for help, tirades of how this is tearing his marriage apart, ruining his finances, etc., etc., and that was just Day One. Day Two arrives, and his wife left, said she couldn't handle it. Day Three, the wife returns and proceeds to spew venomous text messages at me, and I just wait for the rest. Day Four, oh Day Four, she started her period. Frantic calls again. My reply? "Why do you think I sent you the pads and briefs?" Day Five comes with no morning call or text. I feel trepidation, wondering if this is the calm before the storm. Late afternoon, and I hear the peep of my cell phone. It's my son, of course. He now tells me that he never knew what I had done for him for the past five years, and that he can't do it. I tell him he only has to do it for a few more weeks, and she will be back with us for nine months. Today is Day Nine, and no calls at all. Is is possible that the tough love that was so hard to institute is actually working? Could he actually be adjusting to having his daughter and taking responsibility for her? I will be waiting anxiously for tomorrow, but in the meantime I am basking in the glow of having a life again, even if only for a brief interlude.

A solution to the problem...I hope

2009-07-20T18:28:00.000-04:00

I think we may have happened upon the solution for the summertime blues. We have told my son (Chelsea's dad) that he WILL keep his daughter through the summer months. He came and picked her up last night. It will be much better for her than sitting around all day with us old folks. She has two siblings to play with, a great big sturdy dog, and a fenced yard. No more sitting in front of the television all day in the summer. It is definitely what is best for her. My son lives just a few blocks away, so I am comfortable that I can drop in any time I feel the need to check on her. The thing is, I feel sad about the whole thing. Sad because I had to force her dad to take her for a few weeks. Sad that she seems to be the child no one wants, other than me, and I can't manage taking care of her with the other responsibilities in my life, all of which are necessary. I wonder what will become of her in the future. Will she be one of those people sitting in an institution, grasping for any little morsel of attention? I will do my best to prevent that from happening, but I am only one person, and one person with a ton of responsibility. It's just all so sad.

I really hate summer

2009-07-09T19:40:00.000-04:00

Yes, this is one of my dark, depressing posts. Sorry, but this is where I vent, and hopefully get some encouragement. School is out for the summer, which means 24/7 Chelsea. It also means my hubby is too depressed to do anything around the house, which in turn means I work all day and then come home to clean up and take care of things, then start my data entry job. Every year I have trudged through the summer, but this one is different. I am sick. I am struggling to get through every day at work, and hoping I won't lose my job, but it is so hard to keep going when I feel like I do. I have to try to stay awake to do the online work at night in spite of meds that make me sleepy. Then there is the stress of wondering how this will all turn out. The doctor suspects MS, and if that is true, what will become of Chelsea? How ironic to have sacrificed so much of my life to keep her safe, only to have to send her somewhere else. I don't know how much longer I can keep this up, folks, I really don't.

Vocabulary software - interesting learning tool

2009-07-01T20:28:00.000-04:00

I just happened upon this software that helps with learning vocabulary and pronunciation, and who of us wouldn't like help teaching that? It has a free trail trial download link available, so you can try before you buy. I personally think this is pretty cool stuff! If you're interested in checking it out, just click on the post title and you're there.

Resources

2009-06-06T23:03:00.000-04:00

I am working on a new Down Syndrome resource directory that should encompass any and all resources in the US when I am done. I do plan to branch out to resources in other countries as well, but I gotta start somewhere! You can contribute to the directory yourself, or feel free to send me any resources you would like to see included (even if not US based). If you have a DS blog, I will gladly include it in the directory. I will be working on this for many months, if not years,so your input is appreciated. Perhaps I can help someone find the support they need, and you can be a part of that, too. Here's the link:

http://downsyndromehelp.boomja.com/

The Phone Call

2009-06-03T22:49:00.000-04:00

Yesterday I got a call from the group home. Chelsea has been on the waiting list for about a year. They said they had an opening for her, but it was in a co-ed home. I turned it down. As badly as I want my life back, I couldn't accept the placement knowing she would be housed with grown men. I told them I would just wait for an opening at the all female home. Part of me wants there to be an opening tomorrow, part of me doesn't want there to ever be an opening. Sometimes I think I'm just crazy!

Sometimes the stress is just too much

2009-05-18T22:21:00.000-04:00

School will be out for the summer in just a couple of weeks and I still have no one to keep Chelsea. There are no day care centers in my area, and any within driving distance won't take her because of her chronological age. Meanwhile, my husband reminds me that he can't take care of her all day anymore, my son (her father) says he would have to adjust his work hours and he just doesn't think he can do that. I "adjusted" my entire life to accommodate this situation but no one else seems to want to budge. I have no idea what to do.

Problem solved....for the moment

2009-05-11T19:49:00.000-04:00

The Depo shots failed miserably. What was supposed to solve a problem actually made it ten times worse. Instead of having to deal with the "problem" for five days a month, we had to deal with it every day for six months. God bless her doctor, she put her on birth control pills. Not only has the problem stopped, but Chelsea's mood has greatly improved. She will take the pills continuously for three months, then off one week, then repeat. She is getting an interesting case of acne, but that's easier to deal with than the other problem! Hooray!!!!

Happy Mother's Day to all you moms out there!

2009-05-10T17:27:00.000-04:00

A Set-back

2009-05-05T19:56:00.000-04:00

The other day I found myself thinking that Chelsea had been pretty well-behaved lately. No episodes of incontinence, no eating of toys, no pulling the hair out of her dolls, nothing out of the ordinary for any kid. I met with her teacher a couple of days ago and she told me how much she had matured and how much better her behavior had been lately. Right about the time I started feeling pretty good about seeing results of our hard work...major backslide! I got some pudding out to put her pill in. After she took her pill, a customer needed taken care of (we own a greenhouse). I left the pudding sitting out on the counter. When I came back, she had eaten it with her hands like some kind of feral creature. She knows that she is not to touch food on the counter without asking. I won't go into the places she puts her hands, but I don't want them in food I'm planning to eat. Well, fairly minor transgression, so I just scolded her and reminded her of the rule. She pouted for a minute, then went back to watching a movie. A little while later, I gave her a plate of ravioli for supper. Another customer wanders in and I go out to tend to them. About 15 minutes later I went back into the house to find my while dog's neck encircled in spaghetti sauce. Chelsea has hurt our dogs before, and we have a solid rule about touching the dogs without an adult in the room. I suppose I needed a rule specific to choking the dogs. Needless to say, I was furious...and Chelsea is grounded. I don't think it will ever really get better, it just abates for awhile and then comes back with a vengeance.

Grown up stuff

2009-04-26T21:35:00.000-04:00

We've had a pretty good couple of days (I think). About six months ago we started her on Depo shots, for obvious reasons. Well, they had the opposite of the intended effect and that which was only a once a month nightmare has been constant since last November. It finally stopped, and she saw the Dr. on Friday, who is putting her on the pill. Not the perfect solution, but anythings better than what we've been through. My mother thinks she should have a hysterectomy, and I am so torn about that. It's true that her monthly cycle is unmanageable. It's true that it would be disastrous if she would become pregnant, but how to I take an innocent such as her and subject her to surgery?

I took her for a haircut and went for a whole new look. It's a cute little short, cool-for-summer 'do, and she loves it. It was a lot of fun watching her reaction to it. It will be a lot easier to deal with in the morning, too!

I hate feeling like this...

2009-04-21T19:35:00.000-04:00

Summer is quickly approaching, and with summer comes Chelsea's summer break. Unfortunately Chelsea has reached an age where she is physically an adult and my husband cannot provide her personal care. My husband works our small business 14 hours a day in the summer and can't possibly watch her and do that. We had planned on a summer respite placement and we were so looking forward to it. A whole summer to be "us" again! Well, the bomb dropped...no money in the county budget to pay for her summer respite. So, what am I supposed to do now? It's like having an infant and no day care, only worse. It's worse because I could find a sitter for an infant. I can't find anyone to keep Chelsea. There is no help out there. I don't know what people are supposed to do in these situations. I am at the point where I fear we will have to place her with the state, not because we want to, but because we have no choice. I will send another plaintive email to her case manager and let you know what happens.

And the Easter candy just keeps on coming

2009-04-17T20:52:00.000-04:00

This is going to be a very short post because I'm a very tired woman. Although I enjoyed the smile on her face when she got Easter candy, there are only so many times you can tolerate having to hose down a 14 year old every time she eats a piece of candy. How on earth does she manage to look like she rolled in a vat of chocolate when she never left the table?

Up out of the darkness...for a minute

2009-04-12T14:28:00.000-04:00

Since I've been accused of being dark, told that this site is a downer (no pun intended), I thought I would take a minute to tell you some nice stuff. Today is Easter. Since Chelsea will not be joining the ranks of little girls in their Easter finery today, I thought it would be nice to play the Easter bunny thing with her. When she didn't find a basket this morning, I told her that the EB must have stopped at her dad's instead of here. Lo and behold, dad came in with a huge basket, you know, the kind the EB leaves for good little girls. I sat her at the table with her haul and let her eat chocolate, jelly beans and peeps. Clean up was not pretty, but what the heck, she's just a little girl, after all. Happy Easter, everyone!

It's been awhile...

2009-04-07T21:43:00.000-04:00

Hi all! I'm finally back after a long haul with my hubby. He donated his kidney to a friend and had some complications. I am happy to report that both hubby and friend are now doing great! Can you imagine the stress of trying to take care of a sick hubby for months on end and dealing with Chelsea at the same time? I'm going to guess that you really can't guess. But here's the really sad part...I spent an entire week of days in the hospital and nights in a hotel alone while he was recovering from the initial surgery, and they were the best days I've had in a long, long time. Sounds kinda twisted when I say it out loud, but it was so liberating to eat when I want, sleep when I want, not have to bathe anyone but myself. As much as I love Chelsea, I would be lying if I said I looked forward to coming back to her vortex. Back to cleaning up feces and urine, back to picking food out of her hair, back to the absence of peace. The surgery took place in Florida, which also happens to be my birthplace and my favorite place on earth. I had to leave it behind and come back to Ohio, where I hate the weather and about a million other things I won't bother to go into. I sunk into a deep depression, missing the healthy version of my husband, missing my beautiful ocean, missing the "me" I used to be. It has been months and I am just now starting to acclimate to my forced surroundings again. I keep thinking it will all be over someday and I can resume my life again, but I will be 50 this summer...how much longer must I wait?

Trying to have a nice outing

2008-04-27T21:07:00.001-04:00

We have been pinned up in the house together for so long, no money for gas, no money to do anything, no babysitter to go out by ourselves. Today we decided to splurge and spend the gas money to go geoaching http://www.geocaching.com Of course, Chelsea went along, because no matter what we do, she always has to come with us. The first location was a wooded area on a really steep incline and there was a pond at the bottom. I couldn't enjoy it very much because I was worried she'd roll down the hill and into the water. Ever try hiking while holding someones hand? The second location was in a cemetery, so I didn't have to watch her as close. The whole time we were looking for the cache she was babbling and shouting "I found it, look, I found a tree!" Another {ahem} enjoyable family outing. When I was younger and my kids were little, these kinds of outings were the norm, and I accepted it as part of being a parent. I can't seem to do that with her. Perhaps because even at 13 yrs old or 17 yrs old, she will always be like a 4 yr old, so no hope of it getting easier.Perhaps because at 48 yrs old, the last thing I want to do is raise a child, especially once who is eternally infantile. Perhaps because this whole thing was forced upon me.

Just plain annoying

2008-04-23T20:37:00.000-04:00

Not much out of the ordinary today. Just the same annoying stuff. More asking to go to the bathroom, and I still have no idea why or how to stop it. Yesterday I left a pan on the stove and went outside, then promptly forgot about it. The house was filling with smoke and the alarm was going off. She sat on her bed looking at a book, a straight line of site to the burning pan, and never said a word. I suppose she would have sat there while the house burned down around her. I just don't know how to keep someone like her safe.

Strange one today

2008-04-21T22:09:00.000-04:00

Today she had a bag packed, complete with jeans, shirt, undies, and sunglasses ( apparently there are no socks needed where she was going ). Of course, I got no intelligible answer out of her as to why. I can't help but wonder if it was just more strange behavior, or did the pedophile down the street talk to her about coming to his house, or was she going to try to go somewhere on her own? The possibilities are horrifyingly endless.

Camp?

2008-04-19T19:36:00.001-04:00

Chelsea's camp packet came in the mail today. It is our ticket to an entire week of freedom, an entire week of being "us" again. It's a chance to rejuvenate ourselves, our marriage, our lives. The packet that I was so excited to get also came with a bill for $600. Chelsea has never had to pay for camp, it has always been paid for by the Lion's Club (God bless them). Her caseworker assured me she would be able to go this year. The logical part of me thinks this was probably just a clerical error, but the part of me that is so fragile and discouraged is terrified that we won't have that week we so desperately need. I've left a message for her caseworker, and I'll be praying for good news next week.

Nice quiet day for a change

2008-04-17T20:12:00.000-04:00

No crisis of any kind today. I'll be marking this one on my calendar as a "once in a blue moon" event. I told my parents about our decision to search for a group home, expecting a tremendous backlash and assaults on my self esteem. Instead, I got a tremendous amount of understanding. I couldn't have been more surprised. Perhaps I am harder on myself than anyone else. I expect that people will think I am "dumping" her. Maybe I'm wrong, maybe they understand more than I realize. I hope so.

The BIG Decision

2008-04-16T21:49:00.000-04:00

Took a couple days off from blogging because there were some huge decisions in the air. How can we keep living this miserable existence? Not much longer. How can we properly supervise her when she needs constant supervision? We can't. How can we deal with her compete lack of hygiene now that she is an adolescent? Again, we can't. Is it good for her to have no interaction with peers, other than school? No. Is it good for her to never be able to play outside because we don't have time to supervise her? No. Is it good for us that we never have any time alone together, can't go out for an evening together, can't even run daily errands together? No. What to do about all of this? All of this contemplation brought us to the end result; we will start investigating group home placement. Part of me feels like we will have failed her if we send her to a group home. Another part of me knows that we gave her a chance to grow and thrive, and now it's time for the next logical step. Stayed tuned for the emotional roller coaster ride that is sure to follow.

Lots of nothingness

2008-04-13T23:05:00.000-04:00

Completely blah. She stayed in her room and watched t.v. all day. Of course there was the standard "Can I go to the bathroom?" and can I watch t.v.?", but those are routine anymore. Today was so blah I didn't even care that she kept asking me those things over and over again. I kind of felt like someone who is being held captive, not tied up, but knowing there is nowhere else to go. Just sitting and playing mindless games on the computer, answering her mindless questions with mindless yeses. Since the camp people (her teachers) thought she could take a shower by herself, I decided to give it a try, mostly because I could barely bring myself to do it. I watched as she lathered up her hair, not like I would do it, but she did okay. She did a good job of rinsing, much to my surprise. I actually started to hope that maybe she can do this by herself. I stepped back and watched as she tried to lather up a dry wash cloth. Reminded her that it has to be wet, stood there for the three minutes it took for her to process what I said, then watched as she washed her arms, then her bottom, then rinsed and said "Oops, I forgot my face". I informed her she just wouldn't be washing it, since she didn't wash in the right order. So much for my hopes. Fortunately for me, I was pretty sure she couldn't do it anyway, but a gal can hope, right? It is completely beyond my understanding how someone can take a shower every day for 13 years and still not know how to do it.

Just an average (not so fun) day

2008-04-12T11:41:00.000-04:00

She starts the day by asking if she can go to the bathroom. I have no idea why she suddenly felt the need to start asking me that every single time, but she has been doing it for months now. I have told her to stop asking and just go. I have screamed at her to stop asking and just go. Nothing works, she just keeps asking. I've tried ignoring her in hopes she'd just go. That resulted in peeing in a teacup. So I just have to put up with the frustration of hearing that question several times a day for no reason. Most of what she says has no reason. She asks "Can I watch T.V.?" every single day. She has her own T.V. and has never been restricted from watching it any time she wants (except when she's grounded, which is rare). Out of nowhere she will say "You're my grandma". It has become one of many comments she makes that make me think "No shit, Sherlock" in my head. Of course, I can't say it, no matter how frustrated I am. I'm bracing myself for the nightly "Can I take a shower now? I love shower" that makes me want to scream. I think it bothers me so much because I hate shower time so much, yet she loves it. I know she has no concept of that, but sometimes it feels like she knows it and does it on purpose. We will be looking into group home placement in 931 days. Once that happens, she will be here a couple days a week, and we will have our life back. The group home is just a few miles down the road, so I can stop in and check on her on my way home from work every day. I can keep a close eye on her and get my life back. Only 931 days to go....

She's Back

2008-04-11T19:15:00.000-04:00

She's home from camp. The first thing she said to me was "Look, I'm home, I got home today. I like camp". She informed me that she took a shower by herself. I'd be thrilled, because I despise having to shower her, except that I know full well that taking a shower by herself meant washing her face with the rag she just washed her bottom with. What are these people thinking when they put a kid like her in the shower alone? Do they think anyone wants to kiss a kid who showers in the manner that she does? I have tried for the past three years to teach her how to take care of her own hygiene; it's just not ever going to happen. I've tried being patient, I've tried rewards, I've tried being stern, all to no avail. All I get is wet, frustrated, and chronic back pain for my efforts. I would give anything to be able to afford to hire a caregiver just so I wouldn't have to shower her. I have hurt my back more times than I can count and I've come to the conclusion that I am just too old to do it safely. Unfortunately, I have no choice. She can't do it, I can't afford to pay someone to do it, so there we are. Maybe I'm being too uptight about the way she showers when left to her own devices. Maybe I shouldn't care so much about hygiene. I don't know. I don't know if I'm am doing any of this the right way, and there doesn't seem to be anyone to tell me, either.

The last quiet day

2008-04-10T19:05:00.000-04:00

She'll be here when I get home from work tomorrow, my last night of peace and quiet. Unfortunately spent with both of us being sick, so no fun for us. I wish we had just a few more days of being "us" before we go back to being collectively "her". I did rent some movies to watch tonight. What a great night out, eh?

It's soooo quiet

2008-04-09T18:06:00.000-04:00

Got her off to camp this morning and then I was off to start another hectic day at work. Hubby got sick in the middle of the day and I had to leave to take him to the Dr. It's finally evening. It is so quiet in the house that the silence is almost eerie. Who would think one kid could make so much noise, even when she's asleep? There's no T.V. noise, no babbling, no toy sounds, no rustling of the bed sheets, no snoring like a freight train. All I can hear is the singing of birds, the occasional passing car, a dog barking in the distance. I never hear those things when she's here. I only hear the white noise that is her. I have thought about her all day, hope she's having fun, hope she is safe. Do I wish she were home? Absolutely not! These rare evenings make me long for the life I had before she came. The quiet evenings sitting on the patio with hubby. Eating dinner at any time I choose. Not having to know anyone else's bathroom habits. Being able to jump in the car and go to the store anytime I want. Doing things with hubby instead of alone, because one of us has to stay home with her, and because it is too much hassle to take her along. I miss having friends over for cookouts and having a few beers. Heck, I miss having friends. In many ways, having her is not unlike when my own children were small. I was pretty restricted then, too. The big difference is that I knew my boys would gradually gain their independence, thus granting me my own freedom. Chelsea will never grow up, never be able to be left home alone while I go to the store. There is no end in sight, my prison sentence is for life. I keep waiting for one of those smiling moms whose greatest joy comes from cleaning poop off the walls of a teenagers room to tell me what drugs they're on. But nobody's giving up the secret.

Three Days of Bliss

2008-04-08T18:47:00.000-04:00

She is leaving for three days of camp tomorrow. It will be the first time we've had time to ourselves since July 2007. We will have two evenings alone. Even though we don't have any money to do anything, it still seems like heaven just to be free of the responsibility for a couple of days. That just seems sad to me, that so little could feel like such a gift.

Another Day In Paradise

2008-04-07T19:24:00.000-04:00

Well, today was what I view as a good day. There was no eating of non-food items, no pooing in the pants, no peeing in the trash can. I did not have to pick her dinner out of her hair. Just the usual incessant and unintelligible babbling that makes my eardrums numb. Now don't get me wrong, I love her dearly, so much so that I have sacrificed the nice, quiet life I used to have in order to give her a home. But that doesn't mean I have unending patience. It doesn't mean I love cleaning up disgusting messes. It doesn't mean I don't long for a night out with my husband once a year. I am tired of hearing what a saint I am for raising her. I am tired of people touting the joys of raising disabled children. I know that I can't be the only one who is willing to tell the truth, who needs to tell the truth. I can't be the only one who just gets sick and tired of the messes, the problems, the financial strain, the strain on my marriage, the depression. I wouldn't have made my choices any differently, but I need to shout it from the rooftops, "This stinks!', and I want you to be able to do that here. When I read others' comments about raising a disabled child, I usually get a mental image of Donna Reed singing as she cleans poop off the walls. This is not reality, people, so start shouting and we'll start listening and supporting one another.