The Weather

Sharon is a ton like her brother. They love to listen to the police radio (I just don't get that!), watch the news (also don't get it...I hate watching all of the bad news; BRING ON the good news!) and loves to watch and analyze the weather. It's one of those things that I find I have to take deep breaths and just be patient...or tune out...I am getting much better at tuning out :)

But weather in Illinois is obviously much different than weather in California. Sharon has lived in many different places actually, so she has experienced some snow and some cold weather. Generally it has been short-lived. So snow this year was a bit of a fascination for her..until she had to go outside and help her brother shovel it.

She likes to help, so it isn't that she was not willing to help shovel (awesome for me!), but it is more that she watched to see what my husband was wearing and then would just wear the same. BZZT, wrong answer!

My husband has a heavy, thermal sweatshirt that he wears nearly 100% of the winter no matter how cold it is. Sometimes he layers under it, but much of the time he doesn't because he is a big guy and doesn't necessarily feel the cold in the same way as a smaller person might. Sharon's similar sweatshirt is for those in-between days. Totally not adequate for the cold. So imagine her surprise when she walked outside in the sweatshirt and was blasted with frigid temps and snow. Yipes!

This has been another challenge with her...thinking for herself...making the right choice. Mom generally told her what to wear too (also when to go to the bathroom, what and when to eat, the time, etc...my eyes just bug out thinking of it all. How tiring for my mother-in-law...if only she had let Sharon try). So we struggled this year trying to get Sharon to look at the thermometer before she went out. We struggled with her to understand that a pullover sweatshirt likely was not going to keep her warm while she sat around the house (we keep the house at 64 degrees to save money...would have been cooler yet if Sharon wasn't home during the day). She needed to be layering. Gosh, I can't even begin to think how many times we had these conversations...STILL have these conversations. She's just not used to thinking for herself.

So besides the fact that she was fascinated with all the snow we had, how cold it got and how LONG the winter was. We now deal with her terror of thunderstorms. I mean as in, she is really afraid of them. I still remember the first time they visited Illinois from California. Mom and Sharon were sharing a bed in what was then the spare room. We had a thunderstorm and the next morning mom had said she didn't get much sleep because she stayed up to hold Sharon and rub her back.

Really?

Conversations with Sharon about independent living have included the fact that she is just going to have to get used to the storms. We have taught her to try counting from the time she sees the lightening to the time that the thunder strikes so she knows how many miles away the storm is. She said that doesn't work for her. I guess we need to be with her to make sure she is actually counting, trying. More likely she is waiting for someone to count for her. I mean, my five year old can do this.

Let me take a moment to apologize for my cattiness. This just gets a little frustrating. She most often just doesn't try.

Onward. We have also talked to her about the fact that, unless there is lightening, there is a great chance she is going to be outside in a storm while working at the garden center. We ask her, "What do you think is going to happen if there is thunder while you are working?" Her answer, "I'm going to run inside and hide." BZZZT, wrong answer. Our response, "Sharon, you will go inside only if the supervisor tells you it is time to go inside." Her response, "Oh maaaaan. I guess I have to get tough and get used to storms."

We haven't had a tough storm in our area of Illinois just yet. We have missed most of it. Only one lightening storm (of course it was the first storm of the season) and Sharon shut all of the blinds. Ummm, well, at least she stayed in the living room and didn't go cowering onto her bed.

But the next storm I encouraged her to look at the lightening and see how cool it can be streaking across the sky. She said she did (I was at work). I'm not sure if she did, but I hope so. Because storms are way more fascinating than a stinkin' police radio and bad news on the television!

Processing Mom's Passing

I have to admit, I am still not sure how much of my mother-in-law's passing Sharon has truly processed.

She and my husband really do not talk about it much and I know that she hasn't really thought about any of the milestones (like Mom's birthday which was in March) and she didn't really seem impacted by the fact that Mom wasn't around for Christmas. It kind of boggles my mind.

Has she had moments of missing her and crying? Absolutely. I can think of two times. Two. And she said to me, "it's just hard, you know?"

And she certainly still focuses on how much Mom needed her toward the end and that she was "taking care of Mom" toward the end. She processes how the day went that she had to call 911 because Mom had a stroke and couldn't get out of bed. But I have to say that the story is starting to get mixed up now -- which is understandable.

So, I'm not sure what to really say about this. Does someone with developmental disabilities process death differently? Is the difference heightened by the fact that she is in a completely different location (midwest vs west coast)? Is it kind of like a child that sort of knows that the person has been there, but because the person isn't physically there, she isn't totally impacted by the person being gone in the long term? I mean, maybe Sharon is in a better circumstance than most who lose a loved one, maybe she has the capacity to get over loss much quicker than the rest of us (?)

It's an intriguing thought. I welcome your thoughts on this topic.

Holidays on the Homefront

If you have been reading the blog, you know that one of the issues with taking in Sharon has been incorporating her into my family (she is not a blood relative to my family and has only met them a total of two or three times prior to moving in). Initially, I had a sibling that seemed to not understand how this would work, but overall everyone has been really great and things have been working out real well.

You also may recall that I have been wrestling with feelings of resentment over the last several months. Yes, I know that I need to do counseling. Seriously, I know I need to start counseling. In the meantime, I started this blog as a way to cope with my feelings and as a potential, unofficial, resource for others in similar circumstances. One of the prevailing issues in my personal quest with our Sharon situation has been that I could not find anything online (that wasn't academia)-- anyone who was out there sharing their experiences and resources related to parenting a sibling with developmental disabilities or at least taking in the sibling to one's own home.

In the near future, I hope to post some resources. I want the list to be good so it is in progress.

But I digress. The purpose of this post is more about the Holidays and our family. See, since I have been harboring the resentment, I have become a bit noncommittal about so much as it relates to life and family. I have started to develop an "I don't care" attitude. I have started to become selfish with my time. I have also sort of, I guess, forced my husband to start making the transition to the parent/guardian role. Not everything I am feeling is bad, but not everything I am feeling is all that great either.

By Christmas of this past year (remembering our journey with Sharon started in mid-October), I was burning out. I mean, seriously burning out. I was sick of doctors, sick of writing notes, sick of using the telephone, done with riding in the car with Sharon and listening to her constantly talk about things -- and talk about them over and over and over and over and over again. I was just sick of it all.

My feelings would be easier if Sharon was starting to feel the same about me. But just like a child, the more I have been with her, the more she has been wanting to be with me...pairing herself up with me...putting me on a pedestal...talking to me and not her brother about, well, everything. I can appreciate where she has been coming from, but I just want out...I want SPACE! Space is hard to come by in 900 square feet of house with no basement and tons of snow outside!

Wait, you thought the pedestal sounded great too? Well, I guess I don't like it so much now. Maybe I would prefer the ivory tower (?) :)

Anyway, so I wasn't really that much into Christmas or Easter (or New Year's or Valentine's Day, etc) because I just have been wanting to hole up and not be responsible for ANYTHING for awhile. But we all know that is NOT an option. So I pulled up my proverbial bootstraps and did the shopping and preparing (can I tell you how much I have LOVED the JCPenney buy $10 of merchandise, get $10 off at Christmas?! Those literally saved our Christmas...seriously!) and we had some really nice holidays. I have been literally amazed at how comfortable everything has been and how well everything has gone. I know, it was destined to be good, but when so much running around and mistakes are being made that you have no control over...one gets a little discouraged.

I am grateful for the good times we have been having. My daily mantra needs to be (starting now?) that I need to remember them more...especially so I can get out of this resentment funk!

It's Okay If You Don't Agree With Me -- Sort of

This has been a quest. A quest to figure out Sharon's past and a quest toward some organization (as well as answers) for now and in the future.

So when I ask Sharon questions about Doctor's or appointments or past information about, well, anything...her tendency is to tell me what I want to hear than to tell me what is the right answer. OR she gets her stories/facts totally mixed up.

I find myself, when conversing with Sharon and trying to get a definite answer, saying to her "don't tell me what I want to hear, tell me what the truth is." I actually do not like having to make the statement because I feel like I am telling her that she is fibbing to me (which she has, but generally not in these cases). I guess I am just not sure of a better way to get the message across that it is okay to say what is the truth - OR - if you aren't sure, just tell me what you do know for sure and then tell me you don't know anymore. Yes, frustrating to not have the answers, but probably it wouldn't be as frustrating as this guessing game that we have been having.

Any thoughts on a better way to view and/or approach this topic is certainly welcome. I want her to feel she is a part of us figuring everything out, but at the same time, we need to continue to move forward and (ideally) at a quicker pace that she is processing. I know this makes it a little harder on her because she isn't used to working at our pace, but we have so many balls in the air and can't really afford to let too many drop...especially not when it comes to figuring out all that includes Sharon.

She's Smarter Than She Wants You To Believe

Here's a thought...how smart is someone who is developmentally disabled?

Well, just like each of us, there are all levels of intelligence (and common sense) in the world of developmental disabilities.

Sharon is a smart girl - when she wants to be.

I noticed within the first month or so of Sharon moving in with us that she would answer questions that required specifics with generic answers (ie: You just took your medicine. What time do you take it next. Sharon's answer (as she runs her fingers as if counting) "oh right before bedtime"...bzzt, wrong answer...looking for an actual time from the clock). You could make the case for the fact that maybe she didn't know how to calculate or that she didn't know how to tell time well. In Sharon's case, both of those ideas would be wrong.

Sharon knows how to count very well. Sharon is very in tune with time as well (just ask her when various shows are about to be on television or how much time until the next show...she could rattle it off to you in a heartbeat). But when Sharon doesn't want to take the time to figure something out...she doesn't.

So one day I took a chance and said to her something along the lines of "I know you are a smart girl and I think that there are many times that you use your disability as a way of not having to think or do. Would that be right?" Her reaction was priceless. The classic silent movie star reaction with the hands on either side of the head, the wide eyes and the "o" mouth...."OOOOHHHH, I've been found out!"

The other day in conversation, Sharon has even freely opened up about this behavior. So interesting.

Seriously, I don't know truly what I was expecting, but I honestly did not think that she was someone who was lazy, secretive/manipulative. I only knew Sharon the sweet woman who was with mom and was pleasant to be around. Once again, visiting with someone and living with someone...two COMPLETELY different things!

So how is it that she has gotten through life and learning with this behavior of not really answering specifics? I have been really observing and figuring and I think I might (I stress, might) have the answer. I may have alluded to this in a previous post ---- she inserts pauses or appears to struggle with an answer and then she knows that the person she is working with/conversing with will supply the answer for her. I have seen and still see it happen. It is so hard to NOT help out!

Now it is sort of comical. When I am talking to her and trying to get her to engage her brain and figure something out we have lots of silence and almost a friendly stare-down. I just wait. And then I wait some more. And then I rephrase the question and she gives me her down pat quizzical look and then she will guess. Now I can see in her face when she hasn't turned on her brain or when she is trying to appear like she is thinking and I bite my tongue. It's like when you are talking with someone who stutters. I remember learning that in conversation with someone who stutters, the polite thing to do is to let them get it out and to not complete their thought(s). That is what I am doing with Sharon.

She hates it.

She will hopefully start working with Life Skills Unlimited on a regular basis in the next week or so. I keep reminding Sharon that working with this organization is going to be quite a bit like this..."you are going to be expected to think and come up with your own answers. The answers aren't going to be given to you anymore." This is when I can see the streak of fear run through her. Totally understandable. I would be scared too, but it is a good kind of scared.

She knows that she is making her way to finding Sharon. Not Sharon with mom. Not Sharon with her brother's family, but SHARON. And Sharon can do this. She has the ability to be on her own and to think and solve problems. Sharon is just not used to these actions and has a great deal of work to do in order to be comfortable with the situation -- and with self.

She will be great.

Physical Therapy

Several years ago (about four), Sharon fell on the road on some black ice and bent her ankle way under her leg. At the time, mom wanted to take her to the Dr. but the person that they were living with told Sharon to "walk it off." Sharon tried, and eventually, got over it, but it seems as though she should have indeed gone to the doctor as it appears she had a very bad sprain.

Poor judgment on the part of the person they were living with, but as I explained to Sharon...given how often mom ran Sharon to the Dr. for the littlest things, the person they were living with may have felt that Sharon was again "crying wolf" (aka: being a baby) and that is why she was told to walk it off. I honestly cannot say for sure, but the bottom line is...it's four years later and now her ankle is "frozen."

Okay, so she definitely did some damage to the ankle. And when she was working her last job in California she was on her feet for 8 hours a day. Eventually the ankle hurt her so bad that mom pulled her from the job. Yep, I question how much it really hurt her and how much mom really wanted companionship...I think there are good arguments all the way around. But she was definitely still experiencing some discomfort when she got here.

We took her to an orthopedic surgeon and he sent us next door to a podiatrist. Sharon's ankle was definitely stiff, but I do have to say that when anyone touches either of her feet, she stiffens up like a stone. I am sure it is a reaction to the time when it was hurting her, but DANG I don't think I have ever seen anyone react like that.

Sharon was given a cortisone shot by the podiatrist (which she handled way better than I think I would have) and is prescribed physical therapy. Therapy is a good thing, my having to take her -- not so much. She is prescribed therapy three days a week for many, many weeks. Holy crap...can I work some time? Between this and other appointments for her I think I could have a full time job, but am still trying to do my PAYING full time job.

So we do the therapy and we are cracking the whip at home making sure she gets the therapy done at home as well. She actually is pretty good about doing the therapy, but she isn't real great about doing it right. She has made some progress in the movement of her foot/ankle. The unfortunate thing is that she was released from Medicare for her therapy only six weeks into it. Now what? She doesn't have full range AND she was making progress...why was she released?! They couldn't justify further progress. Greeeaat.

Well, we have been making Sharon continue with her therapy. She gets ticked at us because she thinks she should be able to stop because her ankle doesn't hurt anymore. I say to her "do you have full range of motion in your ankle?" "No." "Then what do you need to do?" "I guess my therapy." Right-o!

We still have to be vigilant because she tries to cut the exercises short or she wants to be with the family so she "forgets" that she still has exercises to do. It is so tiring! She will be starting to work her job this week (thank the Lord!) and I keep telling her she needs to keep up because she is going to be on her feet for many hours again...how does she think that is going to feel? She knows. I say, "when you start to shortcut your exercises, there is one word that should go through your head and it's my name. Why? Because I am the one that suffers if you have to start going back to physical therapy. But you should not have to do that because you should want to get better and that means doing these exercises every day, many times a day."

I have to admit, I would not like me either if I had me pushing me to get these done. Such is life.

Are You Really Feeling Weak or Do You Just Have a Cold?

Sharon's mom always jumped at the littlest thing that Sharon had going on. Ow, I bumped my arm...let's head to the doctor. Ouch I have a sore throat...let's treat it with some medicine. ...you get the drift.

So the first time I heard from Sharon "I feel weak" I thought, oh no, I hope this isn't going to be a seizure or the flu. So I quizzed her to try and figure out what "weak" meant.

What does weak mean? "I don't know"

Do you have a headache? "No."

Do you feel so tired you don't feel like you can get out of bed? "No."

Well, what do you mean by weak? "I don't know. I guess I just don't feel good."

Well, what doesn't feel good? "I don't know."

Sharon, you have to help me understand what "weak" and "I don't feel good means." Do you feel sick to your stomach? "No."

Do you feel like you are going to throw up? "No."

Are you dizzy? "No."

Sharon, weak basically means that you don't have energy, that you feel so sick that you don't feel as though you can get out of bed. Do you feel that way? "No."

So you don't feel weak then, right? "No, I guess not."

So how do you feel? "I don't know. I feel weak."

Ugh!!!

Get my point? How did Sharon feel? She had a cold. She had a little sore throat. Did you know that it was the end of the world?

Okay, I know for her it didn't feel good and I know her mom used to drop everything and baby her (How you say? Sharon has indicated that once mom went out to the store and bought her Legos because Sharon wanted something to build. Not just any Legos, but a tub that probably cost about $50. How you say? Sharon has told us that when she felt she had a cold, she would crawl into bed with mom. As a kid you say? Try in the last five years. Remember, Sharon is 44), but come on.

Yep, another rude awakening moment for Sharon. Girly, I said. I know you aren't feeling well, but you have to realize that we all get colds and there isn't a lot that can be done about them. You need to have fluids and take it a little easy. Be watchful and make sure you are taking your vitamins and maybe drink some warm tea for your sore throat. Probably don't have cereal because you shouldn't have milk (if you have a tummy ache) and you should have some soup. But we aren't going to baby you, you need to get through this. If it does get worse we certainly we'll deal with it, but it is best if your body tries to fight what it can. As long as you don't have a high fever, I am not throwing medicine at this...it won't make a difference anyway.

Off to work we went and I checked in with her later. She had tea...she ate cereal (grrr). Upon coming home, found that she hadn't eaten soup, but thought she felt better so she had something else. Feeling better? Great, then the whining can stop for sure right? Caught in a situation there, Sharon. Want the sympathy, but also want to to what want to do. Hmmmmm.

Today was our meeting with Robin at Life Skills Unlimited. We are excited about working with her. Robin is going to get those independent living skills going to pick up where my husband and I have been lacking. Robin will be fair, but she will be tough and make Sharon accountable. I see the tunnel widening..our goal is the end of summer and independence. The journey truly begins now.

Hygiene -- and the Female Stuff

Hygiene. We take it for granted that those who are adults will automatically know that a shower each day (or at least every other day!) is essential. But that wasn't the case for Sharon. It appears that she was constantly told when to take a shower and when to even go to the bathroom. So if we weren't telling her to take a shower...suddenly 4 days later I realized she hadn't taken one. Not good.

And then there is the showering concept in relation to monthly female hygiene. Okay, first of all, is there a way to appeal to the gods (God) to say, hey...some people just don't need to be having a period. Seriously. This so wasn't a question I had given even a morsel of thought about. I figured this was a given as taken care of as well. I would just need to make sure there was product available and that was it, right? WRONG!

Oh my gosh, first I have to see more of her body than necessary because of female appointments and now I have to talk to her not only about her hygiene, but also her hygiene in relation to her period...AND now I have to talk to her about managing her period. Good God, I REALLY wasn't bargaining for this one!

First, I have mentioned before that Sharon does not like having her period. And in her world, she is the only one that has problems with it. Well, we have been working on that concept...it's not just all her world. But that is another topic. Anyway, so when she has had her period, I have noticed her tendency to not shower at all during her whole cycle. Icky, stinky, gross. She thinks it is to shower during the time...it definitely is to NOT shower during that time. So, I have had to talk to her about showering at least every other day other days of the month, but that it would also be best if she showered every day when she has her period. Okay, done. Behavior change is occurring.

Next, I had to address the period in general. I have mentioned before that we are on a budget and I can tell you that her handling her period related to product just about kills our budget! I had to talk to her about the fact that, while it is good to be changing her pad when it gets full or near full or at least a time or two per day, it isn't necessary to use the overnight pads every part of the day. It is more important to watch how things are going and to pay attention to where everything is landing and then make adjustments. Observe, make decisions...don't just let the period happen to you...manage it.

Next thing, at the OB/GYN appointment we talked about the management and the flow and all that and the three of us decided that it was worthwhile to try uterine eblation for Sharon in hopes that her period would go bye-bye. On January 26, I took her for her outpatient procedure and it went really, really well. Sharon was excited about the possibility of having no more period. The doctor reminded us that there was a 70% chance of 100% success and she was going to do a D&C (did I do that right?) prior to the eblation to increase the success rate to 80%.

In going in, it turned out that her uterus was full of polyps. They were harmless, but could have been causing some periodic bleeding issues. Six weeks for follow up and probably one good bleed in between and we should be, hopefully, done.

Well, we aren't so lucky. We are a little bit lucky though. The periods are lighter and only three days now with little to no cramping. This is definitely an improvement. And, with Sharon's better management practices prior to the procedure, she is now managing her periods much better AND without using a TON of product.

Sharon, our budget thanks you :)

Independent Living Skills

On Monday, Sharon will start working with the woman from Life Skills Unlimited. I talked with Robin earlier this week for over an hour. She is really nice and has a lot of great qualities that I feel, at this time, match with the way that we have been moving forward in working with Sharon.

It won't be a cheap endeavor, but it won't be horrible either. At least Sharon has benefits that we can use to cover the cost and move her towards independence.

We had our visit at Pioneer to talk about further services last week. We talked about housing situations. Talk about DISCOURAGING! Group homes aren't an option right now because they are dependent on CILA (Community-Integrated Living Arrangement) which is dependent on PUNS (Prioritization of Urgency of Need for Services). People who have emergency needs are still waiting several years before they are pulled off the PUNS. Sooo, obviously group home is not really an option for Sharon. Transitional Living facilities presently have a couple of openings, but the two women in the facility right now are on CILA and Pioneer can't figure out if they can have CILA funding and other funding in the same home. WHA?! Whatever...I guess that isn't an option for awhile (I did tell the person we certainly were willing to be a pilot though :) Then there is Section 8 Rental Assistance. Because of the economy...eligibility is backed up 3-4 years. Holy Crap?! Can we buy a break somewhere please?!

Well, we are hoping, with Robin's help, that she can get Sharon ready and budgeted so that Sharon can go independent on her own with the funds that she gets from Social Security as well as funds she will earn from her new job. God willing her job will change from seasonal to year-round.

Your Role in Our Family

I think one of the hardest parts of Sharon's move-in has been helping her (reminding her) of her place in our family.

Sharon is used to being equal to the adults, but to make things work in our house...that wasn't an option (sorry if you don't agree, but your house, your rules...my house, mine). Sharon would be treated respectfully and fairly, but when it comes to rules...my husband and I rule that roost. And when it comes to disciplining our child, guess what?

So it probably came as some surprise to Sharon the first time she tried to tell our daughter not to do something and I corrected her by telling her "not your place." I have told my daughter the same thing (you know as she goes from being 5 to 15 in two seconds!). It isn't the constant battle it used to be, but it was surprising to see how much of a tattletale Sharon was and how much "say" she seemed to think she was entitled to when it came to our daughter.

I definitely asserted myself to establish those ground rules quickly and have gained the respect of the authoritarian nearly as quickly. Since my husband struggled with his new role, he hasn't fared as well and even just the other day I had to talk to Sharon about the fact that she needed to afford her brother respect as her guardian and she wasn't allowed to be flip to him (as she would not have been with me).

To go along with all of this has even been the simple act of riding in the car/minivan. Our daughter sometimes likes one of us to sit next to her, but I felt I needed to re-enforce the structure and try as best I could to keep a consistent message. So, it meant even reminding my husband that...when we ride as a family...mom and dad sit in the front and Sharon and my daughter sit in the back. That is the way it is and there isn't any wavering happening.

Again, some might feel I was/am being petty...but honestly, I was sort of on my own and coping each minute of the day with all else I had in my schedule besides this new life role. I needed to find structure and consistency and I needed to pass that structure and consistency message to those around me or we weren't going to survive.

The way it is, there were plenty of days in the last few months that my husband and I have had some knock-down, drag-out fights that tempted the end of our marriage. He has always been a runner and always expects people to give up on him. I truly think it is an extension of his early childhood situation of being released to the foster system. They had a loving family, but maybe not quite the support that they needed.

So this is a huge thing. We are making it through each day, each hour...certainly by the minute.

Recreation Options

When Sharon moved in, we knew it would be awhile before we acclimated her to our routines as well as got her up to speed with benefits and all. Now the question became what to do with her to get her out socializing. She really likes to be around people and is very good around people...so what can we do to facilitate this?

I think I have mentioned NISRA once in this blog. NISRA is the Northern Illinois Special Recreation Association

NISRA is AWESOME! The people who work for NISRA are so caring and the recreational programs that they provide, while sometimes hard to afford, are of a wide range and have been such a great benefit not just to us and Sharon, but also to the others that they serve.

Sharon has participated in a bowling league, has done pizza and a movie (her first time ever at a movie theatre), has taken culinary classes, and more. She loves it!

Sharon has met some great friends and I can't tell you how her face is transforms when she is on her way to a NISRA program. All of the worrying and uncertainty (and loneliness) just slides off her face. She is giddy and euphoric and it makes it worth the hardships in spending the money.

The other great part is that they often provide transportation (for a small fee sometimes) and it gives a family some respite. In our case, it gives us a chance to spend some one-on-one time with our now 5 year old daughter and/or as a mom, dad and daughter unit. This, as selfish as it may sound, is needed.

Sharon starts cooking classes again next week and has some arts and crafts coming up. Excited? Uh, yeah, she is. But I have to admit, I am excited for her...and glad for a little break too.

Appointments, appointments...managing time (and a job!)

Holy appointments, Batman, where is the time going to come from?!

Initially, we had appointments upon appointments upon appointments to get Sharon established and up and running. The appointments were not just with local doctors, but also with agencies for social services. I don't know that I have, in my lifetime, ever gone to so many appointments. And, God-willing, I will not have to endure that hoop jumping again!

My spiral notebook isn't filling as much as it was in October, November and December, but I am realizing that we are already to the point of thinking about follow up appointments. Oh, and we still haven't found a dentist...and she is due for a cleaning. The thought of making calls for follow-ups nearly makes me want to break down and cry. I am so burned out with all of this.

I do have to talk about this: it never EVER occurred to me that I would have to be in the room when taking Sharon to an OB/GYN appointment. I mean, I know we are her guardians, but would that thought have crossed your mind when you decided to take on the sib? What if my husband didn't have me to do this? What would happen? Would he go into the appointment and then leave for the actual exam? Can I? I probably could now, especially now that I know my doctor understands, for the most part, that Sharon needs clarification and that Sharon answers many questions before she honestly understands....I think she knows.

Either way, it was never in my plan to ever be in a situation that I would have to see my sister-in-law in her birthday suit. At the last appointment (a follow up from uterine eblation), I put my nose in the corner of the room again. I told my doc that I was going to bring something to decorate the corner...to make it more interesting. I'm not sure who is more traumatized...Sharon because she was having a female appointment (she hates them and doesn't understand that we all hate them) or me. Yes, people I am joking --- well, sort of :)

Talking About a Job

Before Sharon came to us she had been working at a recycling center as a sorter. Well, I emphasize HAD because she started to have a problem with her foot/ankle and the moment she said she had discomfort my mother-in-law pulled her from the job. It turned out to be a fortuitous move since my mother-in-law needed Sharon to do pretty much everything for them both in the apartment right before she passed (cleaning, shopping, cooking, etc). Sharon was more than happy to do so.

So once Sharon started settling in here, we started talking to her about work. What kind of work do you want to do here in Illinois? She said that she liked doing the recycling work because it kept her moving. BUT she didn't think she wanted to work in recycling in Illinois because the job she had in California was pretty much outside (under cover, but not temperature controlled) and she didn't think that was a good thing. She decided she did want a job that kept her active though. Great!

Since she wasn't going to be able to get work directly through Pioneer Center because they have been downsized in grants, it was suggested to us that we meet with Department of Rehabilitation in Elgin (which I have mentioned before - Jospehine - we LOVE her). So Sharon became eligible for the work program through her office. Yeah! Josephine was quite thorough in asking Sharon questions about her likes and dislikes related to work environment. Sharon actually has quite a good job background with some very diverse skills that make her very marketable for an employee with disabilities. We weren't anticipating too many hang-ups with the job placement.

Unfortunately, the job placement still falls under government and that translates into SLOW. We are now into the month of April and we are awaiting a call from the job that she has been told that she is going to be getting working for a garden center. She is excited and we are too! I'm a little concerned about her standing on that foot for 4 hours a day/4 days a week, but I have had her continue doing her stretching and exercising of the foot that she was doing in physical therapy (a topic for another day). We can only hope that our persistence in making her do the exercises will help her to handle the strain on her limb.

Sharon tried to tell me yesterday that her foot isn't hurting anymore so it is all better. I had her move it around like the physical therapist had to see that she does not come anywhere near the mobility that she is supposed to have. I said, you may not have the pain now, but you don't have the mobility (or the ability to move it) that you should. I asked her how long she thinks she might be standing on her foot when she starts working in the garden center. She gave me a blank look. I said, you are working for 4 hours each day, right? Right. So how many hours do you think you might be standing? Sharon, there is an excellent chance that you will be standing all of those 4 hours. If you stop stretching and exercising now, how do you think your foot/ankle might feel when you start working? Not good, said Sharon. That is definitely a possibility, I said. And Sharon, I said, if your foot starts hurting...will we be letting you quit work? Uh, no...she wisely said. That's right, I said...you won't be quitting work. So what do you think you should do? Sharon replied, keep stretching and exercising my foot so it keeps getting better. Riiiight. Good thinking.

It gets tiring. We know she is developmentally disabled, but we also know that she has fantastic recall (seriously fantastic recall) for many things and we have a hard time being patient when we have to have conversations like this. Why? Because it is a guessing game...is she really not understanding of her situation or is she playing the game because she doesn't want to exercise anymore (which she has admitted to both...not wanting to exercise anymore AND she has admitted to using her disability to get away with not doing something she doesn't want to do or purposefully not remember). Very tiring.