“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.