Sunday, April 27, 2008

Trying to have a nice outing

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 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.

Wednesday, April 23, 2008

Just plain annoying

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.

Monday, April 21, 2008

Strange one today

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.

Saturday, April 19, 2008


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.

Thursday, April 17, 2008

Nice quiet day for a change

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.

Wednesday, April 16, 2008

The BIG Decision

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.

Sunday, April 13, 2008

Lots of nothingness

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.

Saturday, April 12, 2008

Just an average (not so fun) day

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....

Friday, April 11, 2008

She's Back

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.

Thursday, April 10, 2008

The last quiet day

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?

Wednesday, April 9, 2008

It's soooo quiet

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.

Tuesday, April 8, 2008

Three Days of Bliss

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.

Monday, April 7, 2008

Another Day In Paradise

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.