Holy cow...it's been how long since I posted?!

Pardon me...I can't believe it has been more than a month since I posted to this blog!

It's not that I don't find the topic important. It is still a very important part of my life, but my new job has taken up quite a bit of my time and energies...as well as our move!

So now we deal with distance and our relationship/management with Sharon. It hasn't been too bad. As a matter of fact, I would say it has actually been good.

Why would I say good? Well, I had surmised that the distance would help her to not feel that we were readily available and the reverse to be true as well. And I think that is has come to be true!

We do have some concerns that the Program Manager of the house is a little too casual with the girls. Not in the strict way, but more in that she LIKES to do things for the girls and, therefore, why would the girls even attempt to learn when things are already getting done for them?!

That said, Sharon did tell us that she has been told that she needs to ride the bus more for her daily errands. And, she has made a trip or two to the store to get her prescriptions or whatever on her bike. Sometimes it is with the other girls and sometimes she has done this on her own. These are MAJOR steps!

Sharon still does not have a new job yet. This has been an extreme disappointment for us. It seems that since we are not there to do any major pushing, she is falling to the backburner and isn't really being taken to interviews (let alone finding any to take her to). In the last couple of months she has been on exactly one interview. That is sad...there are jobs she can do out there!

We have had to push the caseworker that is assigned to Sharon for Pioneer to communicate with us. She seems to forget that my husband is still the legal guardian and she doesn't seem to remember that many things need to be cleared with us before they can happen...doctor appointments in particular.

Sharon is still working with the outside agency we hired to work on her money skills. Now that I think of it, we haven't had an update on that in awhile...I need to ask my husband if he has and I don't know about it. She had been good about updates.

The other conversation we have been having is how we are going to handle the Holidays. I figure Sharon will be part of the big Thanksgiving dealy at my family's house, but I told my husband that I don't anticipate she will continue to be a part of Christmas. That, depending on how our schedules go, we will plan to either spend the morning of Christmas eve with her and then go to my parent's house or we will have Christmas Day with her if we have more time and don't have to travel back home on Christmas Day. Logistics...gotta love 'em.

In the meantime, we are needing to do a report to the judge to update him about Sharon's having moved into transitional living to develop her independence. I don't think it should be a problem (and what if it is????), but it is a formality we need to do.

Never ending.

Well, here's to posting a little more quickly next time.

Kinks in the Road

We've experienced some kinks in the road during this initial three weeks that Sharon has been in transitional living. Overall it is a wonderful experience for her. She has great roommates and a great program manager (who comes to the house Monday through Friday for a full day each day). Sharon visits with her caseworker a few times a week and every couple of weeks she sees the nurse.

The kinks: 1) I think that Pioneer is used to parents not being interested in continuing care for their child so they are left to take over 100% of the transition. Not so with us and we have found that decisions are being made that not only are we not informed about, but when we find out what decisions have been made, we are not happy campers. 2) Sharon seems to think that now that she is on her own, she does not have to report to her brother; her brother is still her legal guardian and there is no question that he is the final say. 3) The exercise prediction has come true; Sharon, the very next day was already displaying issues with her ankle and, we found out later, took advice from the nurse (which was counter to what our doctor had told her to do) and so Sharon decided to only follow the nurse's advice...her advice? Wrap the ankle in an elastic bandage and let's see. Needless to say...we were furious! Furious at the nurse because she took it upon herself to make the decision without checking with us first and furious with Sharon even moreso because she was looking for the easy way out. 4) Money. Sharon has no concept of budget at this point and this house seems to like to go out for meals as well as go out to shop. We are having Sharon track her money and she is at the point of, "well, if you run out, you run out."

I do have to say that I am having an interesting view of social services as it relates to food at the moment. There is more damn food in that house than I think I have had in my house in a year. No. I am NOT kidding. I think that this is a misleading factor for people who are in transitional living. Possibly sounding harsh here (okay, knowing I am), but it seems to me that they should experience a little of the struggles to put food on the table because that is what their real world may end up like. But they have the ability to take advantage of the Food Pantry (okay, I realize I technically do too, but I don't believe we are so hard up that we need to take away from those that are more in need than we), they take advantage of the food bank and the girls have subsidy as well.

Sharon lost her job last week. The store she was working for downsized staff for the season and now she is no longer employed. She gets enough SS to make it through her rent and then a little, but there are going to be times that things are tight.

Last challenge...we are moving. I accepted a job in Wisconsin which I started last week and, God willing, my husband will get offered a job next week and they will be up here in the next three weeks. How do we work the Guardianship from a distance? We aren't completely sure just yet. We know at some point that we will do just Power of Attorney or something of the like, but for now we want to keep the control until things level out...

Perhaps one of you have experienced distant Guardianship?

And...Break!

Sharon moved into the transitional living facility this week. We haven't done any dancing in our tiny house, but we feel a little bit of breathing room to say the least.

Never heard from Pioneer Center to confirm the move in time, but the program manager for the house told us to go for it since we had scheduled a date (just didn't have a time). So, off we went early in the morning to make sure that we didn't have to move in the oppressing heat.

Amazing how much crap one person can have. I'm honestly not sure what Sharon is going to do with all of her junk once she ends up having a roommate at the transitional living facility (when this happens, she will be sharing her room...the other two girls have their own rooms). And, not that I don't need the exercise, but between my husband and his bum knees and Sharon and, well....I basically did all of the lugging out of the vehicles into the house and then up the stairs.

We got Sharon's bed set up, but we left the unpacking to her (and one of the other girls was there willing to help).

My husband and I went to the bank and the store and, by the time we got home (about 45 minutes from the time we had left the house) Sharon was calling to say that she was missing her quilted mattress pad. Not a small item.

I asked Sharon if she had unpacked everything. She said she had unpacked most everything and she couldn't find it so she was sure that it must be missing...and the thing is, the roommate was feeding her the words to say to me.

Where did we go wrong?

Sharon, I said, I walked through the whole house before we left and I know that there was nothing left here before we went to unpack. I assured her that if she finished unpacking she would find her quilted mattress pad. If she didn't find it, she should call us back. We didn't get a call back, of course.

So, Sharon and one of the girls got her set up and the program manager checked the room to make sure that the layout was okay...and made some suggestions to Sharon for a better way to organize her closet, etc.

Sharon had a great first day and night.

I picked her up for the dr. the next day. We had a nice talk. That was a nice change of pace. I am looking forward to having a nice relationship with her again. I was pretty tense toward her the last few months because she seemed to know better than all of us what was right and the atmosphere here was not pleasant. Now she will have to follow their rules and she will realize that maybe it wasn't so bad here all along.

Anyway, our only huge concern are her exercises. When she got out of the car yesterday she was literally limping...already. That had been my main fight with her...those damn exercises! Now she was already limping and she had to practically hop onto the stoop to get in the house. One day and she was already deteriorating. She said she had done her exercises, but I am not sure she could have if she was walking like that. We aren't sure what to do...or if we should do nothing. Our big concern is that she is going to end up losing her job because her foot/ankle will hurt too much.

Our responsibilities aren't over with her, we know that, but it is nice to know that she is in a place that will help her move forward toward independence...to take over where we needed to leave off.

Moving Into Transitional Living

Sharon is moving into the transitional living facility next week. She is actually excited!

She spent last weekend with the girls that already live on-site and they had a blast. Of course, me (being voice of reason) said that I was so glad they had a nice visit, but then reminded her that, with the fun, her main goal is to develop her independent living skills. Of course, she agreed...but I am not quite sure how much she meant she agreed and how much she was agreeing because she knew that is what I wanted to hear.

Either way, we have tried to cover all angles in this transitional living situation. One of my biggest questions was related to renter's insurance. Does she need it?

The short answer was -- "you are the first person to ask that." The final answer was -- "it's up to you." Hmmm, okay. I know the rest of the house doesn't have it, but does that mean it is okay for us not to? It's not that there are a lot of valuables (trust me, there aren't), but it seems like a smart thing to check into. Can't hurt to get a quote at least.

Monthly Rent and What is Covered
Sharon has to pay rent each month to pay for her living space, utilities, etc. She is going to eventually be sharing her room so what is really being covered? Well, 1/2 a room to sleep in (we are providing furniture), utilities (electric, gas, water and garbage), living space for awake time (living room, dining, laundry facilities in the townhome, etc), some food (they do use the food bank and pantries, but some food the girls are responsible for in addition to buying things like paper products, dish soaps, etc). There is also a bike she could use as well as a computer and entertainment system.

Sharon is also provided a caseworker (who will help her with Dr. appointments, managing her time, budget, etc), there is a nurse that visits every couple of weeks and there is a program manager on-site who she can interact with as well.

What Is Not Covered
Sharon is responsible for buying all of her own personal products (soap, shampoos, feminine hygiene products, clothing, etc). This is very reasonable. She is also responsible for paying for her own entertainment and bus fare to work or activities. I mentioned before we are bringing in her own bedroom furniture and she is responsible for some food and community products. She is also responsible for any additional life skill building programming (we have hired Life Skills Unlimited to work on Sharon's money skills).

Overall, we think this is a really great deal!

I think the biggest thing in getting this to work has been to be organized throughout this process. The overriding words I have been hearing so far are: "you are so organized" or "most people aren't ready to go and so the process takes longer."

I have to say, I didn't feel overly organized, but our schedules are so jammed that I had to have my crap together or we were going to sink from the get-go.

Another thought: have your spouse write questions about the process and facility, and I had Sharon write too. Question, question, question. I admit that I was surprised by the lack of answers to some of the questions, but at the same time I needed to remember that, to some extent, we are a pilot in this effort. I was surprised by the good thoughts that Sharon had to present to the caseworker and program coordinator. Her thoughts were in the form of single words in this case, but she got her point across and it was a good start for her in communication of her needs and questions to needs.

Advocating for herself...that is one of the goals she is working on. That's a tough one when you are 44 and haven't been given the chance to even decide on going to the bathroom on your own. But Sharon being her own advocate is totally do-able.

Our last step, aside from the actual move, is finishing off the medical requirements needed in order to be considered complete. In Sharon's case, she needed to have an updated tetanus shot, a 2-step TB test and the vision screening (all things that could be done with a nurse visit at my doctor's office - thankfully).

Packing on the agenda for the holiday weekend. Joyous packing.

Visiting the Transitional Living Site

Sharon and I went for a visit to the transitional living site last week. It was a long time coming considering we had to reschedule a few times (not necessarily the fault of Pioneer Center...things just weren't working out).

So we sat with Sharon's new caseworker and we sat with the coordinator of the program. It was a very informal meeting with the purpose of going over the extreme basics of what will be expected (as much as they know at this time considering Sharon is sort of a pilot in funding for this portion of transitional living) and deciding on some independent living skills programming that should be employed while she is under their wing.

We turned in some paperwork and headed out into the downpour (it was a crazy hard rain that miraculously abated upon our arrival to the site :)

Sharon was able to meet the other two residents, the program manager (who visits the townhome fairly frequently) and the nurse happened to be there as well. It was great!

Sharon was quite excited to see that her bedroom, which will be shared with one other woman, is the size of the bedroom she presently shares with our daughter. That's good news! Also, the other woman has not officially said yes to the program yet..so Sharon may have some time that she will have the room to herself. This will be pretty awesome too.

Tomorrow Sharon is taking the bus to the home and is spending the afternoon there as well as having dinner with the residents and the program manager. I am very excited for her and am glad to see the smile in her eyes when she thinks of the upcoming change. We were a little worried that she would find herself not as excited, but she really was. The funny thing is that she is most excited about the fact that it has three levels (basement, main and upper). Too funny.

If all goes well with the visit tomorrow, Sharon will be spending a weekend on-site and then we will be able to schedule her transition into the home. We are hoping for a transition in the next three weeks...hopefully Pioneer is close to the same thoughts.

Bon Appetit, Sharon!

Transitional Living!!!

Da-Da-Daaaa (sound of fanfair trumpeting)

Sharon has been accepting into Transitional Living through Pioneer Center. Yeah!

I believe I wrote about the web of potentials (and non-potentials) related to Sharon and living circumstances. Essentially, what we were told about a month ago was that her chance of getting any aid to be on her own - aside from Social Security - was nil, nothing, nada.

At the meeting, I shared we would be very interested in being a pilot project. We would be interested in any situation that would enable the potential for aid and for Sharon's independence.

Two reasons for my assertiveness: 1) I needed to be the squeaky wheel; 2) Sharon needs to be out on her own.

Because we had been resigned to the thought that Sharon would need to head out on her own and live independently in all essence of the word, she was a bit fearful of the possibilities. She hasn't been out of line in her apprehensiveness, she has been sheltered for so long...who wouldn't be apprehensive? Her two main contentions: loneliness and what if she has a seizure?

Loneliness. We assured her we would always be around. Even if we end up moving up north to Wisconsin for my job we would in some way be around. Also, as long as she can fit it into her budget, she will still have the opportunity to do her NISRA programs and be with the people that she has started to get to know through those programs. And, being in an apartment alone likely would be way better than living in our small house with our cramped quarters and a screamy five-year old (yes, only dogs can hear her at times). Her own rules, her own television, her own music, her own room. The opportunities are endless.

Seizures. She hasn't had a seizure in nearly four years. Convincing her that no matter where she is there is a chance that there would not be another person around IF she had a seizure has been fruitless. At this point, it is a big if. But one can certainly understand the reasonings behind this particular apprehension. I think many of us have had a moment of wondering what would happen if injured and no one else is around (it's not really like the tree though...the tree might not make the sound, but I am pretty sure we would still be injured :)

We have attempted to have two meetings related to the transitional living situation. Both unintentionally thwarted by Sharon's work situation (no really, it's true...it hasn't been her fault). So, we embark on another attempt next week to go over the details as well as visit the site.

Exciting!!

Sharon is much less apprehensive about living with three other girls, but I wouldn't be a good teacher if I didn't share with her the potential flip-side to the coin...

Sharon, what if: your roommate likes to sleep with a nightlight? (Sharon did not like light or noise in the room when she moved in - yeah, good luck with that and a five year old is what we told her since she was sharing a room with one in our house);
And, what if: the roommate doesn't like Sharon's snoring?
What will you do if the girls all have specific shows they like to watch on television and you don't like them or if you don't have anything in common with them?

There are so many potentials.

At the same time, we acknowledge that there is great potential for Sharon to know one or two of the girls from her NISRA programs; that they will all enjoy each others company and will help each other; that they have a great chance of learning alot and moving on to independence.

Sharon has had a lot of changes in her life in these last eight months. Just think of what is coming to round out her first year in Illinois.

I know this thought should make me more patient with her, but it doesn't.

When you live with someone and you see what she can and cannot do...you get jaded and have certain expectations. Sometimes the expectations are realistic, sometimes they are not. I have never professed to be perfect...and am pretty sure I won't achieve perfection...but I know what Sharon can do and I will rejoice as I see her open up to those possibilities as her barriers continue to be removed.

“Disabilities Resources Pathway” (WIPA (Work Incentive Planning and Assistance) web site) on Illinois workNet is available to you.

Please go to Illinois workNet to view the Disabilities Resources site.

The pathway includes information on WIPA services, how to contact your local Community Work Incentive Coordinators (CWICs) (interactive county map), information on federal and state work incentive programs, disability rights and advocacy, and youth in transition.

A great resource for information and local contacts!

Kite Flying

This past Saturday we participated as a family in the NISRA Kite Fly. The event was sponsored by the Crystal Lake Dawnbreakers Rotary Club.

Let me say, that was ALOT of fresh air :)

We had a fun time. And boy did people get their kites high up in the sky after awhile (the wind wasn't blowing as well as we would have liked, but it worked).

Thanks to NISRA and the Rotary. A great day!

Musical Interests

My husband's family is VERY christian. At least in the sense of church-going. So, it is natural that Sharon has absorbed the intensity of that spiritual feeling.

I grew up Catholic. While it has its challenges, in my adulthood, I have found my way of being spiritual within my faith and have blocked out the icky bad stuff as my faith relates specifically to me. That said, being Catholic (for me) is not as intense as the feeling of spirituality as some who practice other forms of Christianity.

I still haven't decided if Sharon is truly as spiritual as she thinks she is. She is very suggestible. And because of this, I can't decide if she is intensely faithful or just mirrors the intensity that her mom reflected. I can tell you that in the seven months that Sharon has lived with us, she hasn't missed that we haven't been going to church, she hasn't opened her bible and she doesn't pray. Does that make her not Christian? Of course not, but it does strengthen the wonder of how much she truly understood about her faith and how much she believed because her mom did.

That brings me now to Christian music. I actually don't mind it. My husband introduced me to it when we met and I enjoyed watching the Gaither shows and listening to the occasional CD because he found enjoyment in it. Now that Sharon is with us, I don't find that enjoyment as much.

Why?

Honestly, it is because of this intensity that I don't enjoy it. When the Gaither music show comes on she gets emotional (not necessarily in a bad way) and all else around her ceases to exist (unless she is interrupted and then she starts clearing her throat (her signal that she is bothered) or tries to turn up the television volume...I don't think so!). And when she gets like this she forgets that it isn't her and mom in the living room..that there is another family in the same room who expects to be considered.

Listening to Christian music CDs is the same way. There is a sense of possession. She listened to "my Christian music and I felt like I right at home."

Maybe I am feeling insulted that she doesn't consider her home (our home) her home?

I know that some of this is me being petty. I realize that. I also realize that Sharon is trying to grasp onto things that are a comfort for her from her life with mom. But I also realize that when it comes to the things that she loves, she isn't realizing that she needs to have consideration and adapt. Especially in our small home. We only have one television to share and if she wants to listen to music, it needs to be at a time when our daughter isn't in the room trying to sleep (this, in general, she has been pretty great about).

I guess I just will never understand the feeling that some people associate with Christian music...and that is okay. But also know that we have to live in this one small house and, quite easily, some of these things can be irritating very quickly.

Yes, I know, my problem. But that is part of the reason I write this blog...because I need to put it out there. And I certainly don't mind comments and feedback that extend the conversation and aid in understanding and promote growth.

This was actually a hard post to write. Sorting feelings, finding fairness, tackling a religious topic in general. It is good to tackle what isn't so easy, but not so easy to complete the tackle.

A Helpful Newsletter for Special Needs

Awhile ago I found this newsletter put out by the Special Needs Alliance. It is called, The Voice, and has some great articles that come out about once per month.

Some of the topics might sound simple, but they really cover them from varying directions and get to the heart of the matters (sometimes I have to read the article several times to understand each angle, but it is worth it!).

This month's topic is related to who can sign the application for Social Security.

Sign up to have the newsletter delivered FREE to your email box here.

It's worth the online subscription :)

Finding Help Online -- Groups

One place that I went looking for help in our journey with Sharon is toward online groups. Yahoo was the place, in particular, that I went searching (I have also searched LinkedIn, but not too many other places at the moment).

I found this group, IPADDUnited (Illinois Parents of Adults with Developmental Disabilities). They are a pretty active online group that shares resources, keeps each other updated on the politics and more.

I have just been lurking in this group. Their journeys focus quite a bit on young adults who are transitioning out of high school and into adulthood. And they seem to have more information about resources in the 'burbs of Chicago. But they definitely run the whole range of ages and developmental needs. So they are definitely worth checking out.

If you are interested in keeping up with what is happening for people with disabilities legislatively...they have a pretty good handle on this and some great resources.

There Is Another Sibling With Disabilities

I haven't mentioned to date, I don't think, that there is another brother that has disabilities. He is in adult foster care in the State of Oregon. He was put into the state system way before I ever entered the picture.

What I understand from what I have been told by my mother-in-law and by Sharon is that he was getting aggressive ("violent") toward Sharon.

My husband doesn't know that he was, but he can't say for sure that he wasn't either.

Either way, that is where their brother is. He is a little more developmentally disabled than Sharon and he does have some other tendencies that, especially at this time of life, where he is now is the best place for him.

For quite some time, my mother-in-law stayed in touch with the brother. But one day she told us that the caseworker encouraged her to stop calling because he was getting out of control when my mother-in-law called him. So my mother-in-law stopped. She stopped calling and writing (they hadn't visited him in ages). And at some point in the last few years, my mother-in-law told us that she didn't even know where he was living anymore.

My husband and I had talked about the fact that we needed to get in contact with his brother's caseworker so that, at minimum, we had a way to connect to know if he was at least okay. And also so that they had someone to connect with in case something happened to the brother. Of course, that was as far as it went...talking about it.

When my mother-in-law passed, I had my husband ask about finding the brother's former address from my mother-in-law's address book. The main purpose, so that we start looking for him so we could let the brother know that mom had passed. When my husband asked, the sister-in-law that had the address book indicated that she had already called and had talked to the brother and told him.

What? You talked to him?

Two things: a) Why didn't they let my husband or his older brother talked to the younger brother since they are the blood relatives to him? b) Where did she get the telephone number? Did my mother-in-law have the number after all? The timeline from her passing to the call was next to nothing...she had to have found it in that address book!

So we got the telephone number and now my husband has contact with his sibling. Great!

He sounds fine and his caseworker said that he is doing really well and that he has been missing talking to family..."no one has even tried to connect with him for a couple of years" she said. My husband explained the situation and the caseworker was baffled (this was a different caseworker/home than the one the brother had been in before when my mother-in-law was encouraged to discontinue contact). She said that he has been fine. She also indicated that he has been happy after getting off of the telephone with my husband. That's great too, but does bother us a bit since we were told not to connect with him and he really has been fine, seemingly, all along.

Now the deal with Sharon. She is scared of the brother. She talks about one time that the brother almost pushed her down the stairs (almost, but didn't) and tried to hurt her and so Mom said that she should never talk to the brother or be by him.

As a sidenote: sometime very near to this time, the brother was immediately put in a group home with, probably, no warning he was moving out.

Okay, I am sure that happened. I don't know about you and, of course I wasn't there, but I know that I have been in plenty of childhood sibling rivalries and...while pushing down the stairs is not acceptable..sometimes as siblings we fight and do things we shouldn't do. Could this have been one of those cases? Could the brother have gone too far or did the "preventive action" go too far (removing him from the home)? We can only guess or surmise. We weren't there and we will never know for sure.

So when my husband has talked to the brother, he has asked Sharon if she would like to talk to him on the telephone and she says no.

I talked to her after that about why she won't talk to him. I talked to her about the nice home that he is in and the fact that the caseworker said that he is doing great. We talked about the fact that what happened was so long ago and isn't it time to give the brother a chance? We also talked about how she would feel if one day she was part of the family and then next she was in a group home. She said she didn't think she would like that. I asked her, "How do you think felt?" Sharon's answer, "He probably felt angry. I would be."

The second time the brother called, I gave the phone to Sharon and made her talk to him. She did okay and seemed to be glad that she did.

When my husband called to talk to him again, she said no.

The brother called the other day and left a message on our machine. When I got home a few minutes after the call, Sharon was sniffling. I thought she was tearing up watching "Extreme Makeover Home Edition," but it turns out she was crying because she heard her brother's voice. So I talked to her again. Talked to her about this reaction. Talked to her about the fact that there is a chance that my husband is going to go out and visit the brother and wouldn't it be nice if she went along too.

I told her that the next time the brother calls, she is going to talk to him. I said, "and you know if it is me that answers the phone, I am just handing it to you."

She still talks about being scared of him. But we have talked about how he is always going to have a caseworker with him. About how nice it will be for her to learn about him as an adult and to see how well he is doing and learn about what is making him happy. To learn about him in this new setting and to start all over.

They are likely going to go out to Oregon to visit him in the next six weeks or so. Sharon is going to fly out there with my husband. They are going to just make it a quick weekend, but she is now excited about going.

It's amazing how many things from her childhood she holds onto and how debilitating they are to her in her adulthood. I wish for her that this trip will take away one more ghost from the past.

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.

Talking About a Group Home and When

Sharon was my mother-in-law's companion...especially the last seven years. She was a daughter, sure, but moreso my mother-in-law's eyes and legs (both frightening concepts when your mother-in-law talks to you about Sharon "helping me see while I drive."). So Sharon was an equal at home with Mom as well as Sharon got whatever she wanted, when she wanted. Sharon rarely did any wrong.

I've talked about the reality check Sharon was to encounter in moving to our home. I've talked about how she had been babied and with the reality check will be some shock and some attitude and role adjustment. As part of the whole new living situation, developing Sharon's independent living skills to get her on her own has been one of the major scenario's my husband and I have been envisioning since the day we said yes to having her in our home. Sharon, initially, did not like this idea one little bit.

Sharon is a smart and capable woman...when she wants to be. And when Sharon doesn't want to be a smart and capable woman I see the twelve year old coming out. The child that hides, deceives, exaggerates. Wow, how was I not prepared for this? Duh, she rarely displayed this behavior at home (and certainly not when we visited) because she got what she wanted...she literally was the Princess.

Our two major scenarios were these: Sharon develops independent living skills and starts out in a group home and possibly works her way to transitional living home and then own apartment or with roommate. Our second scenario was us in a larger home that had a lower level that had a shared space, but would give Sharon space to be independent (this was our initial scenario that we thought was reasonable, but then realized wasn't any better than Sharon living in her mom's home all her life).

As my husband has grown more into the parenting role and has experienced the frustrations of coordinating, but more importantly disciplining and checking for follow-through, Sharon's life...well, he has realized that not only are her skills better than she would like us to believe...but it is time to test them out. My husband made the leap to fill out the intake paperwork and has turned it in. The sad part, waiting list is 18 - 24 months. The cool part, Sharon is now interested in the living situation (I think living with my daughter has made her a convert!).

In the meantime, we have discovered some apartments that are affiliated with Pioneer Center that we are exploring. Pioneer provides some services to these apartments and they are on a sliding scale, so this becomes a possibility for Sharon...and pulls the timing up from 18 - 24 months to a much more reasonable amount of time.

But what about building the rest of her skills?

We just had our follow up with the Department of Rehabilitation and she shared with me a resource out of a nearby town called LifeSkills Unlimited, Inc. We are exploring the possibilities of utilizing this service to fill in where we are unable to continue (due to time or lack of resources on our part) developing Sharon's independent living skills. We will see if this is truly a viable option.

The other cool thing? During the meeting yesterday, there was also notice to us that the transitional site has an opening. Now, is Sharon far enough up on the list that this might be her spot or is there someone else that they will give a whirl? Who knows, no word yet, but I am in hot pursuit!

Finally, some things seem to be falling into place after so much time and struggle. God willing, it will continue to work through toward the family goal.

Jumping Up to Today for the Moment...

She's got a job!!! Yeah!!!

Well, I was told by her job coach that she has a job, but they haven't called to let her know when her training is, etc.

Sharon has previous garden center experience so she is going to be tackling some gardening this summer (and hopefully the job will carry through beyond as well).

Exciting!

My husband and I made the tough decision to put in the paperwork for the group home already...and then we found out the wait is 18 - 24 months. Too long. So, my husband has discovered through some contacts that Pioneer Center manages some apartment complexes and is researching this as an option for Sharon. She has the skills to live outside of our home. There are maybe a couple of skills that we still need to build and/or need to acquire resources for, but they are options for sure.

Oh joy, oh joy!

She won't start working for a couple of weeks yet, but at least the time is near.

Celebrating with a garden dance! :)

You Don't Read or You Can't Read?

We are a library family. Well, at least I am with my daughter. I can't for the life of me get my husband interested in books. Which is a shame because he is missing a ton of great stuff out there!

So when Sharon moved in with us I asked her what kinds of books she has read. She shook her head and said that she didn't read books. I said, "What do you mean you don't read books? Why not?" She said, "I don't know, I guess I just don't like them."

Humph. This is interesting. So I endeavored to find out what her reading level is. I asked her to read to our daughter in the car "since she was sitting next to her." Unfortunately that backfired because Sharon employed her tactic that she used with others in that she opened the page and was silent and my daughter came up with thoughts and questions about the pictures so that Sharon didn't have to read.

I suggested that Sharon start reading some of my daughter's chapter books (we read them to our daughter since she is only just starting kindergarten this fall) because they would be a great start. She ignored this advice.

Finally, I asked her if on the night we would attend storytime if she wanted to attend with us. She said she guessed she would try it. So she did. The book that changed it all was "Don't let the pigeon drive the bus." Sharon was laughing so hard that I swear she was about to pee her pants (sadly, not necessarily an exaggeration, but a story for another time). It was funny because of the way the librarian read the book, but also funny because my husband (Sharon's brother) drives bus for a living. Cool!

So then we went into the book stacks. I am the only one that had a card at the time and can only check out a couple of books at a time so I let my daughter check out two books and asked Sharon if she would like to look to see if there is something she might like.

We went over into the younger kid non-fiction section and I showed her books about the Denver Broncos (her favorite team) and bicycling, etc. She was bug-eyed and saying WHOA, I didn't know they had that!

So Sharon picked out a book.

And Sharon read the book all the way through the next day.

And now Sharon is hooked on non-fiction books. Yeah!

Next step, expanding her reading horizons.

Sharon has read tons of the youth non-fiction...now I am wondering if she would try some fiction. So I introduced her to Judy Blume. :)

Can I just say, this is when I feel REAL GOOD about what I do. Sharon is gobbling them up. Truly enjoying. And, she has moved into non-fiction in the adult section as well.

Here's the thing. This chick...who claimed she didn't like to read (though her mom was constantly getting paperback books to read for herself, but never Sharon - I truly don't understand that concept)...is a fairly fast reader. Seriously! And she is doing pretty good with comprehension too.

So why didn't my mother-in-law enable this wonderful thing of reading that she herself loved so much? Gosh, I will never know. But I celebrate her new joy for reading!

We Don't Have the Money to Get What You Are Used to Having

Getting used to our budget is the name of the game. Each day is a new conversation and a new adjustment in expectation.

When Sharon first moved in with us this is what she would have for breakfast: bowl of cereal (bowl filled to nearly the brim with milk (about two cups of milk I'd guess) and then some cereal that ominously floated around in the milk as if the cereal was individual little flotation devices), a glass of orange juice (full to the brim - about 2 cups) AND a glass of milk (full to the brim - about two cups). What?! Okay, I know that breakfast is the most important meal of the day, but COME ON!

Aside from the fact that she is already drinking more than her fair share of dairy intake for the whole day at one meal...Orange juice is expensive and milk isn't any cheaper. Um, we aren't buying orange juice anymore (not to say what it does to her breath anyway - oy, that's a whole 'nother topic) and, um, I think that we are limiting everyone on glasses of milk because we can't afford to be running through milk so quickly. Oh, and while we are at it, you really don't need so much milk in your bowl for your cereal.

The great thing is that she accepts the suggestions very graciously and just says, Okay. The hard thing is that we have to reinforce the message a few times before it sinks in. And, I have to have a conversation with my husband as well because she watches what he has and tries to match what he is eating (my husband is 6' and 300 pounds ... his sister is 4'11" and 190....we all need to lose weight, but you get my point here).

But to the point of the topic of brand name shopping. I just can't do it anymore and haven't for many years now. And it is understandable that Sharon would relate certain products with certain brands, but when it isn't in our budget to brand shop then it just isn't -- and that even relates to female products. I have my preferred as well, but it just isn't happening anymore.

I know I have said this before, but it is worth saying again. We knew this was going to be hard, but we had no idea that it would be this hard. There are SO MANY little things and so many questions and behaviors that we didn't anticipate.

My most recent realization (because I am a bit behind on my realizations :) is that the visiting Sharon (and all of us as well to be fair) is not the same as the living with Sharon (and all of us as well to be fair :).

No $$ Coming in, But LOTS Going Out

Who would have known that we would have had so many glitches with Social Security? I guess we should have. But then who would have anticipated that the main glitch was from the initial visit and a clicking of the wrong button? I guess we should have. But who would have guessed that it would be so hard to rectify this nightmare? Yeh, I know...blah, blah, blah....

So we went for months with no money coming in, we were already living paycheck to paycheck and now we not only had another mouth to feed, but we also had more gas coming out of the cars because we now had tons of doctor and other appointments to make as well as more mileage then which meant more oil changes because oil change time came up faster. Holy crap! More phone calls, more mailings, more time off work (my husband does not get paid for his time off work - as many don't). Crap, crap, crap...we are sliding!

Okay, the gratefuls...we both still have jobs, we have our health (for the most part) and we have house, food, are able to pay bills for now, etc. The stressors...our bills are backsliding, the food situation is weakening, the general stress and chaos is increasing exponentially and family life is drastically changed.

At this point, not sure how we are making it through, but am thanking all above that I had already started Christmas shopping before all this started so we will have a reasonable Christmas. And am seriously looking into the Food Pantry and Food Bank for food options because - health...my husband needs knee surgery (his second for the year). Remember when I said that he doesn't get paid for his time off?!

I feel like my limbs are falling off and am uncertain where to turn. Thank goodness I have resources because of my job and through resources find the right questions to ask (some of the time) and can get to my end goal.

The bigger challenge of the moment is reminding Sharon that a)we aren't running to the store as soon as we run out of something; b)if she runs out of something she better plan far ahead and not wait until the last minute (that includes monthly female stuff!); c)this isn't like your home used to be, I am sorry about that, but you will need to get used to our rules, our way of doing things, but most important - OUR BUDGET (or lack of funds at least). This is not an easy road to haul.

Sharing a Room

We only have a two bedroom house. We had hopes of upgrading one of these days (years), but with bills and the economy. Well, I could come up with a few excuses. Whatever the excuse, it just hasn't happened yet. So, we are cramped into 900 square feet with no basement.

I know, there are plenty of people with smaller homes. Hurray for you if you love it, me, not so much. I grew up with seven people in a house that my dad (fortunately he is handy) kept expanding. That said, I shared a room until I was 19. Again, many people have shared rooms forever too...that's not the point. I was just SO GLAD to finally get my own room eventually.

Anyway, about Sharon. So, at the time that she decided (and we agreed) to come to us upon the death of mom, she knew there was a chance that we would still be in this house. Gosh, if only we had a crystal ball to get a better clue (or at least acknowledge reality) of when mom would pass. Okay, the reality check would have been "Hey, mom is in her 80s it could be any time!" But who wants that dose of reality? Want or need...you know which you should choose. We needed the dose of reality and I regret that we didn't kick it in. Timing sucked, but doesn't it generally?

Somehow I get all of my daughter's crap to fit into half the bedroom. Seriously, I didn't think I could do it, but I did. Now we have space for Sharon. But the unanticipated parts (again, start thinking of all the potential questions as soon as possible): 1) How much crap does Sharon have? 2) Does she possess the ability to be organized with her crap? Answers now. 1) She had tons of crap she didn't need to bring (I wasn't out there helping pack...how I wish I would have been!); and tons that she SHOULD have brought. 2) No, she doesn't seem to possess the ability to not only be organized, but to even figure out the best way to load her stuff into a dresser.

I had a full dresser for her available (5 drawers), plus two drawers from my daughter's dresser plus a 5 drawer lingerie dresser and space to hang in the closet. She filled ALL OF IT - and - she didn't have it all put away yet! CRAP - that can't be. Now, home from work and tired, I have to go through her stuff and figure out why it isn't fitting. Holy moly, unbelievable. I know she had been babied and I know she has a developmental disability, but COME ON! She could definitely have done better than this. I KNOW she possesses the skills to do better, but I (honestly) think she needed the attention more (I am sure mom told her where to put everything away before) and (honestly) was also feeling a little overwhelmed.

Six bibles were packed. Why? Do you read all of these bibles? No. Then why do you have them all with you? I don't know she (the other sister-in-law) said to bring them. Really? Where is the thought there? Um, are all these bras yours? No. Then whose are they? Some of them are mom's. Why did you bring them with you? I don't know I guess we just grabbed a bunch of stuff and put it in the box. Why did you put them in your dresser if you knew they weren't yours? I don't know.

I'm not sure I have the patience for this!

We got it all sorted out, but I really do not believe I had any potential of having these thoughts as questions in my head when we agreed to this. Skills, build the skills. Don't baby, make them do what they can. A pattern that is very obvious with Sharon...if she isn't sure of the answer (or doesn't want to take the time to figure it out) she hesitates or estimates and then stops because in the past others have provided the answer FOR HER or have done FOR HER. I won't do that. She has the capacity. I see it when she wants to do something. We are building independent living skills in her. Figuring out where to put things and folding clothes in a way so as to fit the space allotted is part of those skills.

How does that saying go? God grant me patience............

Fitting Into MY Family

I hadn't really thought anything of the fact that Sharon would have any problems with fitting in. My family is a really open group so I thought that they would be very accepting without us having to have a conversation with them.

I was a smidge wrong. Not a ton wrong, just a smidge. I guess when my dad and mom were talking to one of my sibs it was mentioned to them "well she isn't family" when talking about holidays at my parent's house, etc. Kudos to my dad as he mentioned to my sib how it might feel if a member of the family was asked to stay home and not attend a family get together. The sib at first was baffled that the conversation would even go that way as it would not even be a possibility that one of the family member's might not be welcome. Well, dad said, Sharon is going to be a member of their family now and it doesn't exactly feel right that she should be expected to sit home while the rest of the family comes to our house, does it? Truly, dad was the wise old owl this day.

So dad clued me in on this conversation. A conversation I was not ready to hear since I was very stressed out already. He called me at work so no one at home would be privy and, of course, I cried. I'm stressed, this took me over the top, I cried. I was angry and I really didn't know how to handle it. Should I confront the one sib? Is there a chance the other sibs feel the same way? My dad wondered the same...he wasn't sure. So I stewed on it - without telling my husband. I felt horrible for not telling him, but despite the fact that it wasn't an ideal situation...I still didn't want him to harbor feelings towards my family or to say the wrong thing (he often puts his foot in his mouth before he engages his brain).

I decided I was going to send an email. I know what you are thinking - NO! But I didn't write it and just send it. I wrote it, shared it with my parents for review and input and then sent it with their blessing. You see, I did have to act somewhat quickly as we were about to go to one of the sib's house for a birthday party the following week. I pressed send and waited. I don't believe I heard anything (did I?...shoot, I can't remember for sure, but I know I did not for sure hear anything from THE sib).

What did I say? I let everyone know that we were honored to have Sharon with us. That this was a very difficult time, but that Sharon was part of OUR family which means that she was coming with us to things as part of the family. That when we adopted our daughter we had even worried about her being accepted (even if it didn't show) and now we worry about my family accepting Sharon and asked that they please consider how difficult it will be for her to be there and wonder (for all of us to wonder) how accepting each of them is to our new situation.

The party was fine. Sharon can be oblivious...this can be a blessing of sorts. All seems to be well, but it was a stress situation I not only didn't need...but certainly did not expect at all!

Department of Rehabilitation - Josephine

I mentioned earlier that we were directed toward the Department of Rehabilitation in Elgin, a department of the Department of Human Services. They are funded a little differently and offered us resources that would otherwise not be available to us for Sharon.

Josephine is the caseworker whom we met with. OH MY GOSH...loved Josephine! Josephine related really well with Sharon and helped us to be really open and honest with the options (or non-options) available to us. She steered us where we could be steered and meeting with her and gaining resources from her were SO HELPFUL!

Because of Josephine's direction, Sharon was eligible to attempt job coaching and job placement through Pioneer Center in McHenry County. Without her department's funds, Sharon would have to find a job on her own abilities and compete with "the average citizen." A big WHEW!

I have to look at my notes to see what exactly we covered that day, but I just really encourage you to explore this department if your state has the option. They have been a lifesaver and, hopefully, Sharon will be employed soon (HOPE!).

Dr. Dr.

General practitioner, neurologist, gynecologist (she loves this one - NOT), who else? We have virtually no records and getting what we can is accomplished so now we move forward with obtaining appointments. Oh yeh, her ankle hurts...add orthopedic doctor too.

It's not too hard making the appointments, thankfully we have been fairly lucky in getting appointments with our preferred doctors and them taking Medicare as well as Medicaid (Illinois Department of Human Services insurance). Well, sort of. My general practitioner isn't taking any new patients with Medicare. Great. I want to talk to the Dr. Wait...same with the gynecologist. What? Crap. I will talk to her as I have an appointment coming up myself. Both docs say fine..make another phone call.

It's amazing how long the phone calls can take. Of course, it doesn't help that I hate talking on the phone so I do tend to procrastinate a teeny bit. But I am also trying to fit the calls into the work day in a way so as not to disrupt my work. Uh, right.

I take Sharon to the general practitioner. Yep, time off work. Appointment goes well, they want to take blood since there is no record for it. Make another appointment (more time off work). See Neurologist. Time off work. Appointment runs very late, but that is okay because I made the appointment for the end of the day. He does a few assessments that take about 2 minutes and proclaims that all is well and we should see him in a year unless she has a major seizure. Honestly, overall we like him, but we aren't really sure what to expect from a neurologist so we kind of nod our heads and I make a note in my spiral notebook that is getting quite full.

The gynecologist appointment is joyful. Note to others: think about female stuff if you are about to take on a female sibling. She doesn't manage her monthly stuff well (my God, I didn't expect to have to deal with this?! Why didn't I think of this?!!!!) and I certainly did not think that I would need to sit in the doctor office WHILE SHE HAS HER PAP TEST! The farthest corner was not far enough away, but it was a pretty corner as I stood facing it :) Appointment went swimmingly - so to speak - but we will see the doctor again as we have decided Sharon should have uterine eblasion to eliminate (or significantly reduce) her flow each month. Yep, more time off work.

Ortho doc...crap, MRI; follow up appointment - CRAP...now we are going to be doing physical therapy. Yep yep yep...when am I going to get my work laptop so I can work while I am at these appointments?!

Note to self - yes, we are doing a great thing for Sharon, but if there were ever a next time...there are a TON more things we needed to consider before saying yes. We knew this was going to be challenging, but that word doesn't nearly cover it.

The Tangled Web of Benefits

Honestly, we weren't sure where to start with benefits...beyond that Social Security appointment. I knew we needed to get in touch with the Department of Human Services, but I had no clue what they even had to offer. Pulled the application form, but what do I select? Tried to telephone, but can't get anyone on the phone. I finally decided to fill out the paperwork as best I could and send it in and see what happened. We received a notice not too long after that we had a telephone appointment to run through the application and determine benefits. Great. Date and Time set for us...great...oh no, 10a.m. I guess I won't be in to work right away. Lovely.

To find the initial contact for the Department of Human Services I Googled them. Besides getting the right address and finding the application, I also discovered that we had a potential connect with Options & Advocacy to get on the state PUNS list (Prioritization of Urgency of Need for Services). Excellent! Emailed Options & Advocacy for more information and set up an appointment. The great news, appointment fairly quickly...the bad news...the person told me on the telephone "just so you know, Illinois is one of the worst states for benefits for people with Developmental Disabilities." Fantastic - NOT. We had our appointment with Options & Advocacy. They were very nice and as helpful as they could be. They determined that Sharon was eligible to be put on the PUNS list, but the sad part is that, because she isn't an emergency case (and because our state is in the economic situation it is in particularly), Sharon might not see action from the PUNS list for several years - or at all - if she is lucky. Crap!

Contacts generated from meeting with Options & Advocacy. We will meet with Pioneer Center in McHenry. The great thing is that they have lots of services for people like Sharon. The bad thing (why does there always have to be a bad thing?) is that because of our state's economic situation - again - they have not received many of the grants that they normally would so Options & Advocacy was not sure how much benefit Sharon might be eligible for. Okay, we will try anyway...oh, but wait, before we try Pioneer. Another connection from them...try the Department of Rehabilitation in Elgin. They have a different pool of money that they pull from and may be able to help first to make Sharon eligible for services at Pioneer.

Oh my gosh, documenting, documenting. My head is a jumble of information that I can't trust to remember! Next stop on this road, Department of Rehabilitation. One phrase until then - WE LOVE JOSEPHINE...she is awesome. More soon....

Jumping Ahead for A Moment

I think one of the best things that has been happening lately is the involvement we have been able to offer Sharon in NISRA (Northern Illinois Special Recreation District).

There is a marked change in Sharon's personality when we come close to time for her to participate in a program through NISRA. She gets a little antsy. In a good way. She gets a little more chatty. In a good way. Her eyes light up. She actually smiles and laughs a little bit more. Almost childlike her face looks as we approach the time for her to "be with my friends."

NISRA can be a little pricey for our budget (well, Sharon's budget), but it is worth it because until we find a job for her (working on it), this is her only socialization outside of our home.

Speaking of that...I can't even tell you how important these times have been for us as a family as well. There is a whole different dynamic in our tiny home now. It's not horrible or anything, but it is different and we still haven't completely found our swing on this topic. So when Sharon goes to NISRA, not only is this a chance for her to have fund with people like her, but it gives us as a family to have some respite as well. It's a chance for my husband and I to give our daughter some dedicated time (cuz trust me, Sharon has had plenty of my dedicated time...just maybe not time that has been altogether fun).

The respite has been a breath of fresh air. Our daughter really likes have Aunt Sharon around, but for my husband and I it has added an element of stress that we can forget for a little bit while she is out having some fun and being carefree. For this, I am more than grateful...not just for NISRA, but for the opportunity for Sharon to experience some independence, make new friends...be free.